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year 2017!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 Wilde253 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 Stevenson210 pages
Week 45-46: A Room of One’s Own by Virginia Wolfe138 pages
Week 46-47: Break of Day by Colette – 168 pages
Week 46-47: Memoirs of Mary Wollstonecraft by William Godwin – 133 pages
Week 47-51Moby-Dick; or, The Whale by Herman Melville – 615 pages
Week 51-52Night 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.

 

2016

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.

 

Yellow represents sarcomas.

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.


 

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

 

 

 

 

 

 

 

 

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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.

 

 

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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.

 

 

 

 

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Moving beyond cancer. Is there a point from which you can? Maybe not so early in the game. Only time will tell.

Life continues to pickup and get busy. It is never ending, day in and day out.

Truthfully you need to find the time, to fit others into your life. It may not seem like it is possible, but don’t make work your life. If you can make room, you will be able to fit others into your life. I’ve been able to do just that this past week by simply meeting with friends for lunch. It helps break up the week

Of course, you would rather life be busy and not have to deal with any hard issues. If you combine those two, they will easily collide. I’m sure it would be tough for someone who has never dealt with any hard pressing issues to have those two worlds collide.

Well, how soon do I forget at times about my own life. The ways I get through anything is just to look back at what I’ve personally been through.  Why worry about the mundane things of life. Even though, I still get caught up in those very things. I have a sovereign God who brought me through many trials. I still don’t know why I’ve been all through these trials in my life. I’m still trying to figure that out.

And at this point, no upcoming scans until June. Last year, I had a good bit of scans. Eight total. Some concerns arose because of the uncertainty of those scans. So, this year should be four at the minimum. Glad last year is behind me.

Statistics.  For instance a study of 10 patients vs 100 patients, both are too small to put a patient into a particular category. There is not enough to come to a concrete conclusion. This is in relation to a doctor’s visit crossed with a conference in DC last year. Mainly about recurrence rates and followup scans. The doctor agreed about the study statistics. I disagree with the shorter followup suggestions. She said we will deal it when will get to that point.

Moving forward. Take the time to do what you want to do. Whether you want to learn to play the piano or learn to dance. We don’t know how long we are here. Get up, because there is never time like the present. If we don’t? Well, the choice is yours. But you will be glad you did.

 

 

 

 

 

Life has been busy the past few weeks. Of course with medical related things, it can add some stress. I had two different scans back in early September. One of them was a follow up CT of the chest, which showed two small ground glass pulmonary nodules 4-mm and 3-mm respectively. Since, they are small I still have no answer for it, but still have to follow up on this to make sure nothing changes. I rather not have more radiation since a chest CT  contains a lot and it will be about four chest CT’s in a years time starting around late last year. There are pros and cons of the scans, but what problems can occur down the road because of these is the main issue. Hopefully I can get a lower dose CT scan arranged for the  future six month scans. The next being in December.

The other scan, which I haven’t had in awhile but needed to be done was the brain MRI.  I’m sure most people who know me  or read this blog, don’t know why I need a brain MRI. I do need to followup to make sure nothing has changed. I rarely think about it, since it has been there for such a long time. It all goes back to when I was around seven(maybe earlier). I’ve had brain MRI’s because of the mass in my brain. I’ll step back and explain. Of course is a cause for concern, especially when you are a child at a young age being diagnosed with one.  I’ve had no treatment at all. I’ve had several MRI’s to followup on this when I was younger. It was on the wait-and-watch approach, because the area its in is inoperable. Still even with today’s technology it would still not be conducive in my opinion to perform that operation(But then again I haven’t researched enough about this)  I stopped following up for a span of ten to fifteen years .  The followup I had after all those years was in 2007 and 2008.  So, six years later here I am with this one.  I’ve never really known the size of it, can’t find any medical reports describing the particular size.  I found out on this scan the size described. It being  3  cm in length, 3.6 cm in width and 2.5 cm anteroposterior(front to back) diameter. Also from the report describes it being a moderate-size mass with poorly defined margins in the dorsal lower brain stem and into the upper cervical cord and centered in the medulla and extends to the inferior pons and into the middle cerebellar peduncles.

Well, it is unchanged since 2007. I’m not sure about how much it has changed since scans around 1991  and earlier, since I have no indication of the particular size in my old reports. I thought it was much smaller than the report indicated. And I was under the impression it was a few millimeters. I never think about it because it has been there for a long time. But when I do I realize I have a lot to be thankful for in my life.

God has been good. I’m really thankful for all He has done. I know I’ve been through a lot. I know God has constantly watched over me in my life. I know he answers prayers. So, with each new trial or anything really. I can constantly count on Him. Time and time again, it is easy to worry about the little things in life. But to look back and see how He constantly provides. I need not worry. He provides in the great and small.

All I have needed Thy hand hath provided.

 And I still can’t believe it has been a year.  Tomorrow on October 9 it will be one year since I had my second surgery which was a re-excision to get clear margins.  I’m thankful for having a good surgeon. I know I can thank God for laying all the ground work.  I can look back at previous times such as this, and see how He placed doctors in my life. I know He will continue providing.
“Great is thy faithfulness, Lord unto me!”
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One year ago today.  I thought I was having a seemly benign tumor being removed. I did have some doubts.

Surgery was successful.

So, I found out two weeks later, that this surgery actually involved removing a sarcoma. This sarcoma was a cancer of the connective tissue, or soft tissue sarcoma. There ones that are more severe than this in comparison.  It may not even come back, but reassurance is hard when dealing with a rare cancer like this one.

Especially, five years after another rare tumor was removed. The case is still open on that one. Doctors here (locally)  may think differently but then again they have outdated information still being taught. Not to be too harsh, you really can’t stay on top of everything. I am thankful for the medical care here locally.   But it helps when I advocate and tell them about pheochromocytoma. Still rare and misdiagnosed.

It, has been an experience definitely. I am glad where I am today.  All things have prepared me for where I am now. I can only go forward from here.

In moving forward, I’ve already planned to do another 5k in November. Even though I’ve said this before, running in a 5k never crossed my mind until the end of last year.

  • I run because of the sarcoma diagnosis.
  • Running is healthy and good for you.
  • I’ve learned that I feel great after I run.

Don’t know what the rest of this year will bring. I am ready. And by God’s grace I am still here.

 

[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.

 

 

 

 

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Well, after scans came back pretty much normal from the NIH.

I had two additional scans here in Jackson on May 23. I received the results last Tuesday. On the CT of the chest a focal ground glass opacity (4-mm) was noticed in the right upper lobe. It could mean a different number of things. I will be getting a follow up scan in 3 months to check to see if it increases or disappears. I personally don’t think this will disappear.  Looking back at previous scans, I do see the same exact finding. Hopefully my medical records will be fixed this time around for the radiologist to look back at the previous scan and compare.  [I noticed my digital medical records were replaced by a different person with the same name and birth date. I thought I got it rectified but all my MRI and CT scans were under the other person’s name. My doctor and nurse were miffed by the scans being nowhere to be found. I clued them into the situation, when she brought it up to me. Lo and behold, the scans were right there under the other person’s name. So, digital records up not what they are cracked up to be…  It could possibly be bad if someone is allergic and their allergy suddenly disappears from their record]

So, the ground glass opacity in my lung can be a cause for concern, with my past medical history.  As, long as it doesn’t grow anymore. I’ll be OK, but more answers are greatly needed. Basically told it might clear up. You need a followup CT in 3 months.

I’ll update at another time, when I find out.

 

I guess I should sort of explain, what the term ground glass opacity means. Basically a hazy area, that can be seen on the CT scan. Doesn’t necessarily mean anything. It can of course if you had a previous cancer. But still no definite answer.

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