Posts by: K

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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Lot of things to do, but so little time. Next week is coming up fast. And this week should be fairly busy.

OK. I will talk more about coffee. I am thinking my coffee maker is not extracting properly. Thus my coffee is not good. Looks like I will just invest in a Chemex and just send this one back. There is a distinct difference in taste. Also, not feeling any different after drinking it. Rather not waste good coffee. It definitely needs more time to properly extract and most likely needs to be at the right temperature. I just needed more time to come to that conclusion.

If you like listening to the violin and want to hear it with a twist, throw some dubstep into the mix (just basically some drum and bass, electronic music with it). Lindsey Stirling has a new album out, called Shatter Me. I just came across the album on Google Play. I was listening while practicing writing with my left hand. I didn’t realize what I stumbled upon. I stopped and listened to the music. I then looked up more about the artist, then realized why I liked the music so much.  Beyond the Veil  is the first song off her new album, and found out today it has a music video. An impressive album.

Also, I just decided to look back at my archive of posts. And last year on this day, I started this blog. Well, it has been a long year with finding out that I had a sarcoma, two surgeries, recovery period and the road to feeling better. Once I get through the next two weeks, life will feel a little more normal, without the added stress of upcoming scans.

 

I’ll be heading back to the NIH for more followup scans for the pheochromocytoma protocol in May.  I’ll be there nine days which includes the two days flying in and out of DCA(Not much I can do around town carrying luggage).  On Thursday morning the day after I arrive will begin tests and the first MRI. I will have the next MRI on Friday. After that I have free time until the clinical appointment on Tuesday.

This will be the first time, I can enjoy touring around DC area because of the lull time between scans and clinical appointment. I’ve been to a few places already because of the last two years. This allows me to a focus on a few more places that I need to visit. And catch up with a friend or two in the DC area. I’ll post on the blog of a few things I had the opportunity to do.

Since, I thought the schedule would have me return on Tuesday.  I booked my round trip flight too early before I received my exact schedule. Now, I have a return flight on Thursday as well, to avoid change fees. It makes more since to forgo return flight on Tuesday, and book a one-way flight back on Thursday.

But, having the additional two days  will be good if an abnormality arises and gives me time to ask questions. I rather not rush to make the Tuesday flight with unanswered question.

Then, I arrive back Thursday night and have CT and MRI the following morning at 8 A.M. here at UMC. Which should be very tiring.I’m sure the MRI results will be fine, just another 6 month follow-up scan. Waiting is always the hard part. Hopefully I’ll remember to get a copy of scans on the CD, so I can review the scans myself. Otherwise on Monday, I will have to pickup the results instead of waiting for the doctor to give them to me on June 3.

 

 

 

I’ve just started drinking coffee. I am going on about two weeks now. I just realized it makes me feel great. I’m not sure why it makes me feel the way I do. I feel happy and have the energy that I need. I can accomplish more goals that I need to finish without the added fatigue.

I tend think, since the removal of my right adrenal gland with the pheochromocytoma back in 2008, that the coffee makes up for the lack of the other adrenal.  I know doctors tend to think the other adrenal will take up the slack for the missing adrenal. They are most definitely wrong(*I’m not a doctor). They say this while having two adrenals.  Living with the pheochromocytoma you do indeed have all this extra energy along with other junk you don’t like that it causes.

Here is where coffee comes into play in my life.  I enjoy the taste of coffee. Especially fresh roasted beans. Drinking black coffee is the only way, with no additives. I’ve been trying all the various dark roasts from a local coffee shop along with some of the medium roasts.  I’ve found roasts I love. I also hate flavored coffee. I can’t say I would ever enjoy them, not my cup of tea(Ha! I do love a cup of black tea e.g. Earl Grey).

So, next step was to invest into a coffee maker, because it was a waste of money to buy a cup of coffee every single day. I can buy the coffee and brew it myself cheaper. I found a perfect coffee maker that makes one cup at a time. The coffee maker is made by the Hamilton Beach called “The Scoop.”  It seems to pull the flavor and aroma out correctly. I still think it is wasting a small bit of the grinds but I’ll figure that out within a week or more.

OK, now  back to how is coffee changing my life. I am a person who loves to drink only water. So, of course introducing caffeine back into your diet has an immediate effect.   I am more alert, which is a given.  Last Saturday, I was able to clean up and finish several tasks I’ve be meaning to get done. I used to wake up and want to do something on Saturday.  Then I would  get extremely tired and go to sleep and the day was wasted. Well,  not anymore. Coffee has definitely helped where my left adrenal is not picking up the slack. It also has the added benefit when exercising. I am still training on the treadmill, for another 5k to improve over last time. The added energy does help.

I’m not sure why everyone drinks coffee. I’m sure it is because of addiction and they need it to wake up in the morning. Water can do the same thing for the body but maybe not quite the energy-inducing effect of caffeine. But I enjoy the taste of coffee and need to find out what coffees are good and weed out the bad ones as well. I guess that is one way that differentiates me from the crowd, because I do love the taste of what the coffee I have brings out. Hopefully, I won’t be drinking full pots of coffee in the morning because I am craving the caffeine.

So, in conclusion the coffee adversely affects me in a good way. I’ve never had soda bring on this feeling. I sure do miss the second adrenal sans-tumor. So, every little bit helps.  Also, coffee is good for you according to articles that are leaning towards that. Having a cancer diagnosis takes a toll on your mind and body. If I need drink coffee to make me feel better. I will. You have to step outside sometimes and do stuff to for yourself. It improves quality of life. Eating healthy does as well(I’ll save that for another post).

 

 

I enjoyed completing my first 5k. Even though it was just a fun 5k. It wasn’t timed. I had a mixture of walking, and sprinting in between the crowd. I managed to wipe out within the first minute. I took a pretty good spill, on State Street in Fondren, right before Lenny’s. I fell down on my left side. I scraped up my left knee pretty good, with some abrasions on my hands for catching myself. Also, when I fell down, I hit pretty hard. I had a small scrape above my left eyebrow, and then had a nose bleed.

There was a nice police officer nearby. And I was given a rag to clean up my wounds, so I could continue the 5k.  It might have slowed me down slightly. I stopped for about five minutes or so (not sure).  I still passed tons of people just by walking. I had to sprint faster in between people, so I wouldn’t be stuck behind them. I never stopped until I reached the finish line. I then asked someone the time and she said it was 10:05 or 10:10( I started the race at 9:15.)

I am going to try to improve my time in the next 5k. But otherwise it was fun. I am glad I signed up to do it. Falling down has never stopped me from completing my goal.

 

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.