Category: Updates

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.

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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.

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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.”

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.

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.

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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.

Well, I have a flight booked  to DC and hotel room reserved (June 25-28) now in June for the 3rd Annual Patient Symposium on Pheochromocytoma and Paraganglioma @ NIH. I will possibly be going in May for some routine scans as well. I don’t have any details as of yet. I will post more details when I find out.

I’m looking forward to seeing old pheo/para friends and meeting new ones. It will be a long day but it will beneficial to all who attend. The next day should have a lot of information as well but will probably not be as long. I will post details about what’s on the schedule for that as well.

Otherwise, I realized I have been neglecting to post here. I will try to update about a play I saw last weekend at New Stage theatre, called the Whipping Man. Otherwise today has been a long day. I am glad it is over with now.

Today will be the close of this year. This year brought a lot things I was not expecting. I have been prepared to face this because of trials in my life as I grew up.  Well,  people don’t usually think I am going to have cancer or a tumor etc. Of course that is on my mind, it has been for years. It is something I shouldn’t have to think about being  a possibility. It is usually at the back of my mind.

Starting in 2008 it has made me think about it more.  The removal of the pheochromocytoma in 2008, has made me think more about my health, and how we take life for granted. I’ve felt better every year after the removal, and with the constant reminder that it could come back. In October I made it to the five year mark of being pheochromocytoma free. Which I am thankful for every new year. You begin to realize after the tumor is removed, and wonder how you even managed life with it. It does wreck havoc. The high blood pressure is one aspect of it. e.g. my blood pressure of 220/135 with pulse of 110.  After the removal with blood pressure dropping down and remaining at normal levels. You feel a world of difference. You begin to wonder and wish you had this normal feeling for all these  previous years.  I’m sure it would have helped with a lot of different situations. But the thing is, I would not be the person who I am today without it. I do spread awareness to others, and wish I could do even more. No one should go through this alone.

Back in January, I had more scans(FDG PET and MRI of BODY) at the NIH in Bethesda, MD. That’s is why I flew to DC. Most likely own unbeknownst to people on facebook. A fun trip to see other pheo/para patients then the not so fun part(scans).  NIH is a few hops away to DC on the Metro via the Red Line.  I do expect to go back for more scans in two to three months. Then in May at UMC, I will have two more follow-up scans(MRI/CT) . Then more six months after that. So, with the scans for the pheochomocytoma and now the sarcoma. Basically a lifetime followup of scans.

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This year has been long. Recovery was an arduous process in of itself. Going from feeling better at the peak of being recovered to going back under the knife and starting the whole process over again. The second time, was more difficult. Especially, having stairs as the new challenge in this endeavor.  Moving to a new place after the first surgery, and living upstairs it brought some difficulty traversing up and down the stairs.  Thinking back about to the ultrasound in April, and I was given a differential diagnosis of sarcoma. I researched on topics covering everything about sarcomas.  I prepared myself mentally about the possibility of that diagnosis. The MRI in May, didn’t confirm it but still left it as a distant possibility. Even the doctors didn’t think it was one. I guess with my medical history they considered to be a neurofibroma. Even though I heard the words from their mouths that it was not connected to a nerve (neurofibromas are connected to nerves, usually wrapped around them. Also not usually deep in the muscle). Then the biopsy in June gave me hope, with the results saying a neurofibroma. I still wondered, because of the statement that was said at  a previous appointment.  I then flew to DC  a day later for a conference on pheochromocytomas and paragangliomas. Which helped me enjoy the trip, but could have helped knowing the real diagnosis since I was at the NIH for the conference. I could have conferred with them personally.

Enough of that.  There are different types of cancer. Some people do go through chemo and/or radiation.  Radiation would have replaced the second surgery to clean up margins;  if I had not opted for additional surgery.  Even with the second surgery done, radiation is still a possibility. Just not for now, I am on a watch-and-wait approach currently to see how things progress (if they do).  Which is great news, that I was able to hear before Christmas.  I know a lot from researching about radiation that it would not be needed right now but it was reassuring hearing it from the radiation oncologist himself.. I’m not ready for radiation and do want to go through it because of damage to normal cells. And definitely do want to do it for good measure if it is not necessary.  I go back again in four months to see the radiation oncologist again, and hopefully it will be the same good news then. To wrap up this paragraph, I know people who have gone through so much more. I in no way I am putting what I’ve been through above their own trials.  We all go through different trials in life whether cancer or other hardships.  As each year goes on finding out someone you know dieing from cancer, is a common occurrence when you are connected via support groups. So,  I know they faced such rougher trials and are troopers.

One more thing, I need to say. A cancer diagnosis does change you. All of life around you changes. You realize who are your real friends; who care. It does make it harder for people to talk to you. I am sure because of that barrier between you two. But looking again, and from what I learned this year. There are ways to overcome the diagnosis and not let it slow you down. It will definitely bring a lot of stress on a person, even if they don’t say a word about it. Trust me, it is there. And  returning to work, it all becomes different as well.  Even, with people you interact with on a weekly basis. You learn to do things for yourself. If something makes you happy do it.  Relieving stress is the biggest part of it all.  There are various methods but remember that small thing you do for yourself, is better for your well being in the long run. I know it helps, it doesn’t change the diagnosis. e.g. I did watch a movie with a friend and missed another event  this year, that I felt I should have attended. So, basically I am glad I made that choice.  It was a form of therapy, which helped me just get away from things for two hours.

Now, I do feel a lot better. I am walking normal now. It has taken two months, since the surgery in October to feel the way I do today.  I have goals that I need to make now. I do plan to at least run a 5k this year. I haven’t even attempted to run even a short period. I know I can walk just fine. So, a goal for 2014 is to complete at least one 5k. There is a 5k in March, called Color Me Rad, that I might just prepare and enter.  I won’t let the sarcoma diagnosis slow me down. And with a little less muscle mass in the right leg from the surgery, I won’t let that be an excuse to not participate.  I fully plan to follow this through. I don’t know where 2014 will bring me but 2013 has definitely prepared me more for this year to come. I have some stresses into the beginning of the new year, but hopefully those will work themselves out. I am thankful to God for bringing me through all these years, without his help and guidance I don’t know where I would be today. He is my rock and shield. He will continue to safely bring me through into this new year. And I am thankful for His love.