Tag: sarcoma

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.

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.

 

 

 

 

[NOTE: I put this post on hold from 8/3/2014, and just now got back to it on 8/9/2014]

Well, it seems the past several months have been a blur.  I just came to that realization early this morning (5:30) and thus the feel to write this down(6am ~).

It may even go further back. But I know even though I am experienced, having been through more than someone should have to go through dealing with surgeries from a young age.

It is a lot for a five year old to start off with a major surgery. I don’t recall how long the surgery lasted. I remember bits and pieces of being in the hospital before the surgery and recovery afterwards.  I remember the initial blood draw before the first surgery. Then possibly two – three hours later, they wanted to draw more blood. I was not happy of course, having to go through that whole ordeal again so soon. That day I learned about my holding my breath during the blood draw so it wouldn’t hurt.  Well, that’s what I was told but most likely used to distract me from the needle going into my vein. But truth be told, I’ve held my breath every time since then, which is too many to count. And I don’t recall anytime hurting using this technique. So, I think it works.

Next, I remember seeing the ceiling and going through a few double doors as I am pushed on the bed on the way to surgery.  When I was recovering in the hospital, the only thing I do remember is playing this video game in the hospital with my mom. This will sound old but it I think it was pong or variant of that. It an actual table based version of the game and you are looking down upon it.  She had me walk back and forth after each game or so, to the other side. Each step did hurt as expected but I had to learn to walk with this new device (Harrington rod)  in my back.  And since no physical therapist was there to actually help. We were left to do this on our own.  Of course there was a lot of recovery time back at home, but I don’t remember that.  But those are  the memories of my first surgery.

It got easier with each surgery, to accept and go on. I did have to learn to walk again with each surgery. Here is another reflection of the time on one of my surgeries, when I did not want to drink the horrible tasting medicine used to relax me before surgery. It was a small ordeal, and I went into the bathroom after drinking the small cup.  It left a awful aftertaste, and I tried to get rid of that taste the best I could.  The thing is you are not allowed to eat or drink any liquid after midnight, so water was not allowed to wash away the taste.  I was already nervous about the surgery, and telling a child you need to drink this to feel better. It does not equate with them especially  allowing the taste to linger while waiting to be rolled away. One tidbit I found out later that I could take a shot instead of drinking the liquid.

Well, when the next surgery rolled around. The nurse came over after I was checked in and waiting on the bed in the at Scottish Rite Children’s Hospital in Atlanta(Where all my spinal surgeries were performed) She then had with her this all to familiar yellowish orange liquid. I told I didn’t want to drink that and rather have the shot. She was quite surprised. It was the best feeling ever not having to drink the medicine. Shots I can take, I don’t like drinking medicine before surgery.

— I’ll save more for another post.

But back to the main point. Even after all those surgeries, and removal of the pheochromocytoma. It still does  not prepare you for finally hearing this tumor is not benign and it is a sarcoma(cancer).  It still fundamentally changes you.  This time was different.  I’m not sure how distance I’ve been this past year in communication or going on with life.  Just taking each day as it comes. I’ve realized I may have ignored and not talked to people when around them.  There could possibly be mixed emotions or feelings stemming from this lack of communication.  Even though I don’t say much on what is going inside, there is more there than you realize. Probably a lot built up  over the years. I am not the best communicator.  It is hard to move on when you don’t know how long your life will be in the next few years.

I understand that most people don’t have to think or should they have to about death.  The truth is you really don’t know. But when issues like this arise. You do think about it. It can’t be ignored.

You also do not know the Lord’s plan for your life.

I know I’m in a better position having been through these previous medical issues. Basically by going through each surgery, and being here today. It has prepared me for any upcoming trial. All I have to do is think back in amazement, how I have come this far. I know God has a plan for my life. I can clearly see has He watched over and protected me. Even though I don’t know why I have to face these trials. Everything else is small potatoes in comparison. I know that what I face is even smaller than others.

Life can easily pass you by if you are going too fast. I too need to slow down. Mistakes happen but you grow from that. You never know of that missed opportunity if you don’t take it now. I’ve learned from this past year, you need to do what makes you feel better. It makes all difference.

 

 

 

 

Surgery was successful. It went smoothly. I am recovering. Good news to hear. Neurofibroma removed.

Until today. I don’t like turning something cheerful into something gloomy. I am feeling ok despite the news today.  Still processing everything, I’m sure it will be on my mind as the days, and week goes on.

I went for a post-op follow up to the surgery on August 9. I was originally supposed to see a nurse practitioner but it was changed to the doctor yesterday morning. I thought good, I get to ask her questions and get answers instead of waiting till September 3.

I had a short list of questions ready to ask the doctor.  I forget what was said before, the usual wound is healing well, I am doing ok etc.

It turns out this is not a neurofibroma, despite biopsy saying it was one. The new diagnosis after the specimen was reviewed by pathology is low-grade fibromyxoid sarcoma. The same pathologist actually looked at this tumor.  Well, it brings up a whole new list of questions and answers.

I will have additional surgery, to remove more margins. Because why remove the amount you need to with a sarcoma, when you think it is a neurofibroma. That is understood.

I will have to wait till this scar tissue heals before the next surgery, which should be less of a recovery. I will need to be back on crutches then for a short amount of time, hopefully.

Then MRI every 6 months, for the next 5 years. I hope to continue in the protocol I am already in at the NIH, that will scan my body, and show anything that spreads which will supplement these scans.

OK enough for now. Originally though to be a sarcoma ends up being one. I am glad it was removed and not put off because it was just a “neurofibroma”. Imagine later finding out, it doubles in size and being a higher stage sarcoma. I will press on, as I always do. The only thing keeping me up is trusting n God. He has brought me through every surgery, provided for all my needs, answered prayer even when I didn’t pray. I know I will get through this, it is just another bump in the road.. “I can do all things through him who strengthens me”