Brain MRI & PET Scan Review Part II

Good evening! I’m so sorry about the delay. It’s been a rough and long 2.5 days to say the least. As always, it can never be cut and dry. Furthermore, I arrived home about 1am last night only to wake up 5 hours later to start the day with the kiddos. For those with migraines, drastic weather changes with lack of sleep, a lot of stress, and a child that needs a lot of attention all day is a recipe for headache disaster. Needless to say, it’s been a long day, and we greatly appreciate your patience.

First, thanks be to God that the brain MRI was clear of any worrisome issues. The previously treated lesions were stable and show no signs of concern. Furthermore, there are no new spots to be remarked upon. This is amazing news. We don’t have an explanation of the sudden onset of intense headaches, but with it being non-disease related, I’ll figure it out! I plan to see a local neurologist in the near future to help me get a grasp on this! For the time being, thank you for praying so hard for a clear MRI!

Now, the sobering news isn’t so great. As you may recall, I had a PET scan about a week ago. Within the final radiology report, a small 15mm lesion with an SUV of 2.8 was remarked upon in my right lower lung. At the time, I convinced myself that it was an artificial/anomaly or some sort of inflammatory change non-disease related. I also didn’t have the actual images to look at yet to take a look for myself.

Fast forward to this week in Houston, I brought all of my medical records with me as I always do including the most recent images and report. With some down time prior to my consultations, I decided to some of my own reviewing of my medical history, especially of previous scans. I went back to my CT scan at the end of July 2015, and I found a disturbing note/remark. There was a lesion measuring 2-3mm at the time in the same exact spot as the lesion remarked upon last week.

It was not an oversight by any party involved. We would never let that happen. I remember vividly discussing those July results with Dr. Ravi. At the time, I was finally recovering from a very rough 2.5 month upper respiratory infection. There were multiple tiny spots remarked upon in that scan so we chalked it up to inflammation from infection at the time. Adding to our theory about those spots, my last PET scan in October did not reveal any abnormalities in the current area in question. There was nothing to tell us otherwise.

Unfortunately, the time between my very initial lesion in my left lung to my recurrence was 2.5 years. This was without chemo for 2.5 years. The precedent this disease is showing is peculiar in that it is a slow grower which is very unusual for angiosarcoma. I’ve been off of chemo for almost 10 months now, and it has been almost 3 years this February since my last known lesion outside of my brain. Timing is about right if you want to look at it that way.

In Houston once we received the all clear MRI from both Dr. Lang and Dr. Li, we were not leaving the consult with Dr. Li until we reviewed the PET scan with her. She is a radiation oncologist after all! After some figuring out with her staff on who has the images and report, we were able to view the images with her. As a side note, we could sense God’s presence and protection. I don’t believe in luck or coincidence. With that said, it just so happened that one of Dr. Li’s most trusted colleagues was in clinic still. This colleague is a radiation oncologist who just happened to be a lung specialist for the first half of her career (15 years) prior to transferring to head and neck. Needless to say, she took over this impromptu consultation. Pretty amazing witnessing story, isn’t it?

Unfortunately with my findings of the previous scan, this is very worrisome for a recurrence of angiosarcoma. Even without the previous scan, it still presents as my first lesion in 2009 did, just not as big. Since it was remarked upon before, this signifies growth between the 2 scans. We discussed treatment options from a radiation point of view. With the location and size, they recommended breath holding SBRT (stereotactic body radiation treatment) – it’s much like gammaknife with precision, but this is for the body and takes into account breathing and body movement. Due to the fact of only having one lung, doing a biopsy is unlikely because of the risk of a pneumothorax (collapsed lung).

To say this is devastating would be an understatement. I have no doubt about beating this disease again. It’s the implications of it’s return that have me worried.

We’ve done 67 rounds of chemo and 6 total surgeries thus far to hopefully destroy this devil disease. This is why recurrences are extremely difficult to handle. You’re starting at square one except it isn’t the initial square one. We’ve trekked so far already only to start with all the beginning problems just without the initial treatment options. There’s a lot to say about having a plethora of treatment options to try. It gives you so much hope, confidence, and strength. Don’t get me wrong. It’s far from over. I already have a lot of options I’ve kept in my back pocket and researched. It’s just a lot more work and research on an already depleted energy level.

So, now what? First, Dr. Ravi was out of country visiting family. He arrived back into the states yesterday, so I texted him. He’ll compare the 2 scans as soon as possible, but I have no reason to believe he’ll think differently than my radiation oncologist. I put a call into him this evening. He answered, but asked if he could call me back. I’ll hear from him some time tomorrow to update you all more. When we spoke late last week, he eluded to the fact that if this in fact angiosarcoma, he would want me to go back onto systemic therapy.

Next, nothing else changes. I still will not let it define my life or how I live each day. We’ve been blessed with so many days together as a family. I’ve been blessed with so many wonderful memories and so much love to fill 100 lifetimes. We’ve been here before. We know what to do, and we know how to do. One day at a time, and we can do it together. We need you just as we always have. We cannot do this without you.

We will fight. We will win. We will survive.

I love you all so very much. Please keep us in your prayers as always. Thanks for being my inspiration to want to live in this wonderful and loving world.

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PET Scan Results

Good afternoon everybody! I truly hope this message finds your lives full of laughter, joy and love no matter what life throws your way. It’s not always easy to laugh and smile, but it is always worth it.

Unfortunately, we did not get the slam dunk report we were hoping for. On the other hand, it wasn’t utterly devastating either. Don’t get me wrong, any report that doesn’t come back clear takes its toll on you. I have attached the report with this update.

PET-1

There is a 15mm lesion remarked upon in my right and only lung (lower lobe) with an SUV of 2.8 (2.8 isn’t very high at all, but my disease has never been high on the SUV scale). If this turns out to be disease, it is small and can be dealt with. However, in the end if all minds believe it to be disease, I will be going back on systemic therapy as it would be a sign that it is most likely elsewhere in the body that we cannot see.

With that said, I don’t want to say I wish it were cut and dry. If it were, that would mean it is definitely positive for disease. We don’t want that. This is the very reason I greatly dislike PET scans, especially without contrast (we opted to forego CT with contrasts for now to give my damaged kidneys a much needed break). If you recall, my last PET scan had us chasing ghosts in my spinal canal and liver. Thankfully, both of those turned out to be nothing. It could very well be the case here. So here we are, again, chasing an anomaly.

Once I received the final report yesterday, I immediately mailed both the images and report to Dr. Ravi at MD Anderson. I also am going to bring my personal copy of the images with me next week just in case the mail doesn’t get there in time. MDA has a very inefficient method of getting mail to the correct locations and even more so to get outside scans read in a timely matter. For this reason, it is easier to bring my own copy so my doctors can upload and view them with us.

Personally, I am not convinced this is disease. This could possibly be because I don’t want to believe it, or I don’t think this disease would be dumb enough to take me on again systemically after I kicked it’s butt the first two times! Either way, and I am no radiologist, I could not find the lesion in question when I looked at the images. It is small and has a faint uptake value so the odds were pretty small that I would locate it, but I take that as a good sign since it doesn’t jump out at you like others have.

So, now what you may be asking? Honestly, we wait. We live. Once I let my amazing wife know the not so good news, I went back to my day. I played 2 riveting games of mouse trap followed by 1 exciting game of RangerLand, Jr. with Landon and Logan. This was followed by a wonderful evening with my beautiful wife. Life doesn’t stop nor should we. I’ll fight it no matter what it is. I’ll beat it like I’ve done many times in the past. Nothing changes.

Is this the very best way to start 2016? No, but it certainly isn’t the worst by a long shot. We just need a clear MRI next week to get back on track!

Please continue to pray for us. Please let this remarked upon lesion be nothing but another silly and pointless anomaly. Please pray next week’s MRI goes very smoothly!

We love you all very much. Thank you for taking care of us, always.

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Absence & Update

Good evening, and a very happy Sunday to all of you. I’ve been absent. I know. I cannot tell you how much the messages mean to me/us even though I was silentfor a time. We cannot thank you for always caring no matter the circumstances. We are loved by, prayed for, and cared for by so many. You never let us forget this fact.

gamma4-2For some unknown reason, I took an unplanned respite from Facebook. For this, I am very sorry as I realized I haven’t updated since Gammaknife besides the picture of me driving post procedure. As evident of me writing this message, I am alive and well, or as well as can be considering the wrenches that life keeps throwing my way!

For those that just want the quick and dirty, everything is okay with us. There were no complications with the lumbar puncture or the gammaknife procedure. Furthermore, the pathology for the lumbar puncture (which tests your cerebral spinal fluid) came back negative for disease which is great news! I never suspected anything within the CSF, but it’s always a great feeling to have a test come back negative and unremarkable. Lastly, my blood work is continuously showing improvement in my kidneys. I have stopped all NSAID medications as well as getting PET scans without the nephrotoxic contrasting agents that have been believed to be damaging my kidneys. We are taking out both of those factors (NSAIDs and contrast) to see if I get improvement in my kidney numbers.

For now, we wait until the first follow-up MRI which is scheduled for January 26 at MD Anderson with consults with Dr. Li and Dr. Lang on January 27. Furthermore, tomorrow we are beginning our 2016 edition of kicking cancer’s butt with our very first PET scan of the year, January 18 at my local hospital. Please pray for our very first of MANY clear scans and please pray for answers to my current and ongoing lower back/leg pain which has been on and off since August.

As for the day of Gammaknife, some of you may remember the last post I made prior to getting treatment was confusion as to why this procedure was scheduled to take 55 minutes. The lesions that were known to me were small, and there were “only” three of them. My very first gammaknife was 17 minutes long and treated a single lesion that was bigger than all of those in question this time. My third gammaknife was around 45 minutes long and treated two lesions, one of which grew to a 3cm lesion. My second gammaknife was somewhere in-between those timeframes. With that said, I could not fathom why this procedure was going to take the longest. The only reasons known to me were number of lesions, size, and complexity. My mind decided to concentrate on number of lesions and size. To make matters worse, when I asked the nurse how many lesions were being treated, she said Dr. Li wanted to speak to me first. Good grief! That isn’t what any patient wants to hear, especially moments away from surgery!

It was a very long wheelchair ride (they make me despite all efforts to showcase my walking skills) down to the gammaknife suite as my mind went every which way. As Dr. Li came in the room, she didn’t waste any time. She said the radiologist remarked upon quite a few spots. I asked how many, and she said many. She quickly went into what the plan was. I’m a visual person so she took us to the computer to view the images together. She said Dr. Lang and herself went through each remarked upon spot and each image to discuss/debunk any and all that they could. Many were artifact findings (anomalies) and some were ultimately determined to be blood vessels. It is my belief that the machine was an older MRI machine because the quality of the sequence we looked at resembled what seemed to be an inkblot test! The use that machine because of its thinner slicing capability for higher resolution images within the contrasting sequences (remember they use T2* for my case). Between the two of them, they decided to treat 2 lesions, and the 2 lesions happened to be ones we knew about and expected. They were the right frontal and left parietal lesions. As a side note, none of the lesions enhanced which is a very good thing. Either they were too small or they are something else entirely.

Here is the excerpt from the radiology report for the above mentioned MRI:

Findings: There are 10+ foci demonstrating decreased signal on susceptibility weighted imaging arrowed on series 3. A total of 2 lesions within the left parietal lobe focus demonstrating patchy enhancement (series 3 image 55) and another one in the right frontal lobe (series 3 image 45) to be treated today. A couple of indeterminate foci are circled, as are previously noted areas within the right temporal lobe. Prior treated lesions and right frontal resection cavity are unchanged as is the associated enhancement. Ventricles are age-appropriate in size and configuration.

IMPRESSION: Gamma knife planning MRI for 2 foci of decreased susceptibility effect within the right frontal and left parietal lobes.

gamma4As for my absence, it is hard to convey a fighting spirit or a vision of hope when pain is present. To compound the issue of my back/leg pain, I’ve had almost nightly migrainine-level headaches that wake me up. I had migraines when I was a younger, but after cutting out sugar and caffeine, I haven’t had one in many years. I blame it in larger part to this crazy weather after having spinal fluid drained with a lumbar puncture a day before having a gammaknife halo attached at 4 pin sites. I’m exhausted to say the least, and I use every ounce of my energy on my wife and children and rightfully so.

For those that have chronic pain, you can attest to the fact that it takes a whole lot of energy to just bring your mind to live each day. It isn’t the pain level that is an issue for me. I can withstand a lot, and I am not one to complain about being in pain. It has never been my thing to do. This isn’t to portray a “tough guy” or “macho” persona. Quite the contrary. It is my belief that the more you talk about a negative (pain in this situation), the more it becomes a focal point of conversations. It isn’t something I want to dwell on, focus on, or draw attention to. It’s life. It happens, and I want to train my mind to not focus on it so I can live how I want, when I want, and do all of this with a smile. It takes a lot. It is a constant battle between mind and body. Personally, yoga/meditation plays a very big part in trying to control what is real and how your mind/body perceives each anomaly. Let’s just say it’s a work in progress! smile emoticon Please don’t misconstrue that if it started to greatly affect my mentality and daily actions toward other people, I would seek professional help as this can be very detrimental to not only myself but for all those I surround myself with.

Personally, I am not concerned that the migraines and other pains are in any way cancer related. They don’t fit what I know, there is no logical pattern as to their happenings, and they are not continuous. However, it’d be nice to know what’s going on. We’ll find out soon!

There. Now that the not-so-fun stuff is up to date, it is a huge relief. It’s been on my mind every day, and the wonderful messages of love and worry have been amazing. Thank you!

In closing for now, one of my physicians before year’s end mentioned they hope that we have better luck in 2016 than we did in 2015 against angiosarcoma. While I know what they meant, I just gave a simple reply. We made it to 2016. What else matters? No matter the journey, isn’t that the goal? Are we not trying to just survive with any means possible? For me at least, 2015 was a very successful year as were every year previous. Life is what you make it. You try and control the things that are possible, and you rely on the collective of an amazing support group to help you through the things you cannot. When all is said and done if it is God’s will, we will live and survive to tell of our great feat that we accomplished through prayer, tears, strength, hope, fear, and determination. And we did it together. Apply that to any situation in your life as well. It’s universal no matter how unique each of our journeys are.

Thank you for being a part of this thing called life with us.

Please continue to pray for us, especially with my PET scan tomorrow and MRI the following week. Have an amazing evening. A little late, but a very happy New Year’s to all of you.

We love you so very much.

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Gammaknife #4 this Friday

I pray you are all enjoying your lives and laughing as much as possible. We sure are trying over here, albeit it is very hard some times. If we can do it, so can you! Life is too short to live in the past or be upset.

I just heard word from Dr. Ravi in reference to him reaching out to an expert in diagnostic radiology. Here is what his colleague said:

“Reviewed early studies going back to 2-5-14 and patient has initial lesion consistent with brain metastasis and foci of hemorrhage and later developed other similar lesions.

These are consistent with angiosarcoma but not specific.

However, with no other tumor presenting itself during this time then need to fall back on metastatic angiosarcoma even though unusual.

I don’t see anything that would suggest infection or parasites thus left with metastasis.”

In other words, our glimmer of hope that this is anything other than the devil disease has been shattered. Gammaknife #4 is still a go for this Friday! All the ducks are in a row, and I am ready to forge this battle once again. Onward and upward!

We love you all, and please keep us in your prayers. The only uncertain thing at this time for surgery is whether we are treating 1, 2, or 3 spots. We’ll find out soon enough.

Thank you for being with us during this awful times. I wish so bad they would just go away!

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Recent Scan Results

Good afternoon, and a very happy Thursday to all of you incredible people in our lives! It was a very long day yesterday, and we had to do a lot of running around with extended consultations with both Dr. Li and Dr. Lang as well as an additional phone consult with Dr. Ravi on the way to the airport. I finally arrived home a little after 1230am only to wake at 6am to take Landon to school. I’m exhausted! Honestly, I’ve just been spending time with my 3 year old who is happy all the time. I need a little happy, and he cracks me up! I’ll try and keep this as short as possible (not so much), but as always, it’s a bit complicated.

So, it wasn’t the news we had hoped for. Whenever I start having too much fun and enjoying life again, life tries to intervene! However, we can do this. There are 3 spots that were collectively remarked upon by Dr. Li and Dr. Lang, but it gets complicated and frustrating about what to do which I will go over later. One is located in the right frontal lobe anterior to the large resected tumor (laymans: it’s in the right front part of my brain between my outer forehead and previously removed 3cm lesion from my open brain surgery). Second is located in the left occipital area (back left part of my brain). Third and most worrisome to me is in the right hippocampus (deep within the brain). None of these lesions enhanced, and they were only noticeable on a specific sequence called T2(star). For now, gammaknife is tentatively scheduled for December 18 pending some outside opinions my physicians are seeking from trusted experts in radiology and neurology.

Unfortunately, the radiologist who read the scans didn’t pick up on any of them. It is not a lack of professionalism or lack of care by the radiologist. My lesions are usually picked up first on what is called the T2(star) sequence. Before my case, my neurosurgeon and radiation oncologist hardly, if ever, looked at this sequence of imaging to determining new lesions. Given my clinical history, they go through this sequence with a fine tooth comb now.

First, the blessings are plentiful. I always try to look at what I am thankful for in any situation because there is always something. We are always protected and cared for by God in one way or another. We are blessed with an absolutely incredible medical team. As I mentioned above, they are meticulous about every image and scrutinize everything. They went through the scans independently and remarked upon these spots on their own.

Second, my insurance is absolutely amazing. I will not get into a debate about healthcare, but from my point of view knowing many patients, there are many horror stories these days concerning benefits dropped and out of pocket expenses. For me, I am beyond blessed to have the insurance I do. I have both a case manager and nurse manager who call me every week or two to see what I need, where I need it, and how soon. They personally take care of everything so I do not have to worry. They are amazing and are angels in this fight. We struggle financially as it is, but without them, we wouldn’t be able to do what we do.

Third, our support group is second to none. Thank you for caring, loving, and following our story. You stay by us and remain diligent in protecting us and covering us with prayers no matter how much time passes. You have not wavered in this fight, and because of that, neither should I. We will win this. Thank you!

As far as a plan, it’s complicated. My doctors are baffled as what to do. At this point, the issue is what are we fighting. My neurosurgeon questioned it this time, as did Dr. Ravi. Dr. Ravi is seeking an outside consult of a trusted friend of his who is a talented neuroradiologist. We will see what her thoughts are concerning this new findings and decide from there how to move forward.

Our options are either to do gammaknife next Friday, December 18, or do a short interval MRI in a month to restage these spots. The main concern is it isn’t entirely safe to irradiate areas that are benign. If they are in fact angiosarcoma, it is an easy decision. Unfortunately, there has been no confirmation that this is angiosarcoma. So…what else could it be? We have no clue. It could be any myriad of things, but none of them make sense. To make matters worse, the resected tumors from my craniotomy were completely necrosed and impossible to get any pathology out of them. In other words, they were completely dead tissue with no way to tell what sort of disease they were. Furthermore, these new spots are far too small to conduct any sort of pathology. Adding on, the doctors are in disagreement as to which spots are disease, which are results of brain surgery, and which are ???…who knows what. It’s all speculation, but in a twisted way, it gives one hope. It gives me hope and a drive to figure out and fight this off. It helps me focus, fight and move forward.

Obviously, I have my doubts that this is anything other than angiosarcoma. It wouldn’t make sense if it was something else, but it also doesn’t make sense on how these are surfacing, how they are presenting, and how they are behaving. It’s very complicated, and it is extremely exhausting. I cannot even begin to describe the feeling of uncertainty on what to do let alone what we are dealing with.

If we wait, does it give this a chance to progress if it’s disease? If we treat aggressively, are we over treating something that could end up being potentially harmful in the long run because it’s some benign anomaly? Are we missing something somewhere else in the body that is feeding these rogue sites? If we are to irradiate the hippocampus area, we must somehow be absolutely certain this is a malignant disease as this area of the brain is extremely important in our physiology.

With that said, we are scheduling a lumbar puncture to test my CSF fluid to make sure we aren’t missing something else with the CNS. Let’s hope and pray no abnormal cells are found within my CSF!

Long story short, we are assuming these are progressive lesions that need to be dealt with immediately. Gammaknife is scheduled for December 18 already as the surgical schedule is rapidly filling up due to the holidays approaching. Out of the 3 lesions, the only one agreed upon by all parties to be the most threatening is the left occipital anomaly. As for the right frontal spot, Dr. Lang believes it to be a result of surgery whereas Dr. Li believes it to be something else as it has noticeably changed within the last 4 MRIs. As for the spot within the right hippocampus, it does not enhance, and it has remained unchanged for about a year. It’s still there, still visible, and still needs to be monitored.

We will wait to hear otherwise about gammaknife. Please pray for us. And if you hit the lottery, please consider sharing as these back and forth trips, surgeries, travel expenses are getting rather expensive for us. 6 years of doing this starts to add up! Thank you, SO MUCH, for all of the fundraisers you have held for us over the years. I cannot begin to tell you what a blessing those have been!

We love you, so very much. I do not have symptoms. I remain active and healthy on the outside. It’s a lot to absorb, think about, and decide, but I will remain positive, hopeful and determined as long as God continues to pave the way and bless us with the breath of life.

Have an amazing day! And thank you for all of your kindness.

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NED!

For once, I will keep this short and oh so very sweet!

3 scans completed.

3 scans with no evidence of disease!

I don’t think this round of scans could have been any more fatiguing! Furthermore, not much else can get scanned unless we go organ by organ.

Thanks be to God, I am NED!!

Say it with me – N.E.D.!!!

His mercy is with us, and I do not know why. We are forever grateful. It’s an amazing day. Please join my family and me in saying a great big prayer of thanks. Thanks for His continued humbling lessons. Thanks for His healing touch. And thanks for his mercy and promise of never leaving our side.

Along with this note, I have attached the 3 radiology reports (T-Spine, L-Spine, and Abdomen). I also attached messages from members of my amazing medical team (Dr. Ravi and Dr. Lang’s team). They are truly a gift from God.

We love you all!1970597_10206905308343890_55712003771229172_n 11990544_10206905306463843_773231824110258064_n 12038249_10206905307863878_2801298576858209809_n 12047080_10206905305823827_7762379234582772430_n

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October 14 Update

Good evening! I know quite a few of you are worried about us, but please don’t be. I am extremely sorry about the delay, but trust me when I say, I am exhausted. I was up for 22 hours straight yesterday starting with my MRI in the morning and finally getting home at 215am only to wake up at 615am to start the day with our boys today. I still haven’t caught up on sleep, but I must get this out to all who care and love us so much! This is the first chance I have had to sit down and write to you all. I’ve spent a lot of the day trying to get more tests ordered and trying to figure out who want’s what and where.
As with the norm, there is no cut and dry scenario especially when I am having 2 different scans. Something will almost always be remarked upon. We’ve known this, and we’ve been through this many, many times. With that said, I have attached both radiology reports (MRI of the brain and PET/CT of the body) with this message.

12109306_10206857959480198_8105810652015327358_nThe MRI of the brain was great. There are no new visible lesions, and all other treated lesions are stable or decreasing in size. This is amazing news, and one I that always has me up at nights thinking about. My brain, as of this scan, is clear of visibly active disease. Thanks be to God! And thank you, so much, for all of your continued prayers and words of hope and love. They can get us through anything and everything!

12096046_10206857960000211_8482937192464164641_nAs for the PET scan, there were 2 things remarked upon. First, there is abnormal uptake within the spinal canal at T11/T12 (last 2 thoracic vertebrae). As you can read in the impression of the PET scan, a spinal MRI of this exact area is warranted. A few notes about this finding before we go on. It would be very rare (I’ll never say impossible) for this disease to be in this location within the spinal canal. All doctors agreed upon this, and Dr. Ravi has never seen a case with angiosarcoma. Also, some may remember I had a spinal MRI just a month ago. With our physician’s eyes on it, we compared the PET findings with the spine MRI from a month ago as well as the CT portion of the current PET/CT. We could not find anything suspicious or of any concern to coincide with the abnormal uptake.

The spinal canal is small, and in order for something to light up on a PET scan, it would have to be of a certain size. There was nothing to be seen. However, any and everything is speculation from all parties right now so there is no use going into all that it can and cannot be. The list is plenty long. An MRI of this specific region (T6-L4) will hopefully be ordered soon, and this will put the issue at rest most likely. I’m hoping my local oncologist’s office can get it in the works tomorrow.

As for the second item on the PET scan, there was abnormal uptake within the right lobe of my liver. Dr. Ravi was able to view what the radiologist was referring to, but it is hard to say exactly what it is at this point, IF anything. As he stated, all PET scans are good for, currently, are to indicate areas of possible need for further investigation with more detailed imaging. This is one such case. As with the spine, an MRI of the liver with and without contrast is warranted as well. We hope this will put this at bay once and for all so we can move on to living cancer free!

If you are lost at the above, long story short: it was a great trip with good news. We have just a few hiccups to take care of with further specific imaging. For the time being, I do not have any confirmed, active cancer. We are pending NED status. The list of what this could be instead of cancer is long up to and including a fluke or misread from the PET scan itself. I am not going to lose sleep over it (I don’t think I can afford to lose any more sleep) nor should you.

The facts are this: brain MRI is clear of active cancer – amazing news! PET/CT is clear of active cancer pending an MRI of my liver and my inferior thoracic spine. The increased uptake anomalies mean nothing until confirmed or cleared by a high resolution scan with/without contrast.

It was a great trip! And I am so happy to be home with my amazing and beautiful wife, and our very active and healthy two boys. We love you all! I will most definitely keep you updated on when the scans will take place and what the results are.

Please enjoy every second of your lives, and tell those who care so much about you how much you appreciate them in your life. We can never do this alone. We shouldn’t have to do anything in life alone. We love you all, and please say a prayer to God of thanks for us. Have an amazing evening!


My Spine MRI is this Thursday at 715pm. My Liver MRI is this Friday at 815pm. We most likely won’t get a result phone call until Monday. Since I can’t wait that long, I will go in Saturday morning to see they have been read.

Please continue to keep us in your prayers. Very stressful days lately!

We love you all so very much.

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Once Again – NED

Sept 2 ScansHello from Houston!
I’ve been having some pretty high level and constant pain for the last month involving my left iliac / lumbar spine area with pain shooting all the way down my leg. I’m very pain tolerant, but I get more suspicious these days about anything new regarding my body. This being said, we had an impromptu T-, L-, C- MRI (MRI of the entire spine) performed. The added 1.5 hours that took threw the entire day behind. We rushed over to consult with Dr. Li and rushed to Dr. Lang shortly after. We went back to the hotel to pack and checkout, and hurried to dinner and the airport!

We can breathe now!

For some reason, NED is following us everywhere. wink emoticon Yes, we are once again –
NED!!!!!

Thanks be to God for miraculous healing and answered prayers. Dr. Lang is concerned about my sciatic issues still even though the spine MRI came back clear.

To be safe, we are going to do another short interval MRI with a PET/CT this time in about a month.

For now, let’s live our lives to the best of our ability!

YAY FOR BEING CANCER FREE ONCE AGAIN!

WE LOVE YOU ALL!

 

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CT Scan & MRI Update

I hope this message finds your lives full of love and making wonderful and long-lasting memories.

August 4 2015 MRI August 8, 2015

I am so very sorry about the delay in getting this message out. There is a reason this recent trip to Houston was scheduled during this time frame. We got the results and had to travel home on Wednesday. I arrived home Wednesday evening at 130am. I had to wake up early and finish the CADD drawings for work that I was unable to finish prior to leaving for Houston. I finished them just in time for Andrea to return home. Once home, we had to finish packing in order to head to Peoria – the whole reason for scheduling this week’s appointments early – for my brother’s wedding! We arrived into Peoria late Thursday night at about midnight.

We spent yesterday walking around and visiting Peoria, including the CAT world headquarters followed by a hands-on museum. We then went to the wedding rehearsal followed by an amazing dinner with everybody. Long story short, this is our first chance to get a message out to all of you. We so very much appreciate your patience and understanding. We’re just living our lives and making beautiful memories in the face of adversity.

Recapping first, the amazing news with the CT scan is huge. We are calling that part no sign of disease with the intent to keep an eye on what was mentioned by my local radiologist. Dr. Ravi did not see anything of concern within my one remaining lung. Praise God!

As for the MRI, it is not good or bad … yet. For the most amazing news from it, there are NO new spots thanks be to God. That is a very big thing! Unfortunately, the lesion in the left frontal lobe that was small and barely detectable and ultimately treated with Gammaknife back in May isn’t behaving the way any of us would like. As a side note, there are expected changes with any surgery. You can expect edema and possibly some increase in size (doesn’t mean growth) due to inflammation for some time after.

We had our routine one month Gammaknife MRI at the beginning of July, and the report read great concerning all treated lesions but especially the most recent SRS surgery. Concerning the left frontal lesion that was treated, it read “Redemonstration of treated bifrontal lobe lesions without any evidence of new intracranial enhancing foci to suggest intracranial disease recurrence. “

Unfortunately, the current MRI read anything but normal. Furthermore, my neurosurgeon is on FMLA for most likely another month, and his input is crucial at the moment. I have a message out to his staff, and they reached out to Dr. Lang. Ironically, he is currently in Michigan! In short, the current MRI (attached to this message), reads: “redevelopment of enhancement at the site of a previously stereotactically treated metastatic lesion within the left frontal lobe, now measuring 5.2mm.”

We saw another surgeon, and he voiced a different point of view than that of my radiation oncologist. As another side note, this is why it is critical, as a patient, to have a multidisciplinary team especially this far in the game. Every physician has seen things differently in their careers, and all are equally as important.

Dr. Demonte, neurosurgeon, clinic note:
“Current MRI of the Brain, per Dr. DeMonte, reveals a 5mm enhancing left frontal lobe lesion near the site of recent radiosurgery. He is concerned that this may be new disease versus inflammatory, radiation-induced changes.”

Dr. Li, radiation oncologist, clinic note:
“His most recent scan of the brain shows slight increased enhancement along the left frontal lobe lesion, which looks most consistent with radiation change as opposed to progression.”

I share all of this, every time, for many reasons, but no more than to show you what we are faced with almost every time. There is no right or wrong. Nobody knows so we have to make a decision with our gut and past precedence. It’s fatiguing.

I voiced my concerns to Dr. Ravi that I am not at all convinced this isn’t disease progression. He agreed, and we will wait to see what Dr. Lang’s interpretation is. For the time being, we are doing close follow up scans for both the CNS and rest of the body. In other words, 4 weeks for the next MRI to check on the status of the brain and 6 weeks for the next CT scan of the body to check it all but most importantly, to check the status of the right lung.

What now? To be as cliché as humanly possible, we live, laugh and love. It doesn’t change a thing. We hurried home from Houston, as planned, to do what was mentioned earlier, and now we are having an amazing time in Peoria.

This isn’t bad news nor is it good news. However, I would like for once to just post NED. Unfortunately, it isn’t in the cards at the moment, but it will be.

One might ask, “why does God allow this to happen?”. Honestly, if that is your thought process, you are looking at this from the wrong perspective. The answer is thank you, God, for not allowing this to be so much worse. Thank you, God, for giving me a beautiful life with a very strong woman and two amazing and HEALTHY children! Thank you for all of the wonderful memories to date and the many new memories to come. And thank you for giving me the tools to fight this disease, which includes but is not limited to, the most amazing support group ever know, present day treatments, and the most excellent of physicians.

Please pray for use to get through this month leading up to the next scans. Please pray for an amazing outcome in the next round of scans. Please pray for peace of mind and the continued ability to live life to the fullest making memories full of laughter and love. And please pray that my brother, Kyle, has an amazing day tomorrow followed by a lifetime full of love and happiness as he marries the love of his life, Abby.

John DeerAs we visited CAT world headquarters yesterday (and it was amazing), it would only be right to drive to Moline and visit the John Deere world headquarters today followed by a water park tomorrow before the wedding!

Don’t let life’s circumstances define you. You define your life and how it is lived, God willing.

August 11, 2015

The image studies came in the mail from MD Anderson yesterday. If you are a visual person like me, all you read with my update on Saturday was bla, bla, bla … not a good MRI, but not a bad MRI either … yet.

I put together a comparison of the most recent MRI (August 4, 2015) to the one month post gammaknife MRI (June 2, 2015) to show you why there is concern.

comparison

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(click image to enlarge)

You’ll want to take note of the different shading around the areas (contrast difference – enhancement – edema (bleeding/swelling)), difference in size and just the general appearance in one and not the other.

One might say the images are cut differently especially with only 24 images per series in some (multiple series in an image study). This is very correct AND very important to consider. However, I matched the 2 up as accurately as allowed by the 2 different studies. For the ones where it shows up now and not before, I was meticulous in the fact to make sure that it shows up on multiple slices (unable to show here since they are still images). This means that although the slices are not at the exact same point in comparison, by spanning multiple slices it should show up on both if it is present on both.

^^^^^what this last paragraph equates to is that I did my due diligence in selecting relevant images. I did not post inconclusive evidence when comparing where it just isn’t obvious between the two.

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Update & Request for Continued Prayers

7-27-2015scanGood evening, and thank you for all of your love and prayers. We need them, always, as does every single person.

Nothing would make me happier to say that it was a home run / slam dunk scan, but I cannot. It was remarkable, and the remarks concern my one and only lung.

3 subcentimeter lesions were mentioned within my right lung.

It is too early to tell what they are exactly, but they are big enough to be mentioned. They were also not seen on previous scans.

Could it be nothing? Absolutely. Could it be everything? More than likely, but it is out of our hands either way.

The plan is to stay the course as we always have. Fortunately, my day to day life keeps me very busy playing with and chasing kids (sometimes chasing Andrea!). In your every day John Doe with no health issues, these would probably not have been mentioned. However, my disease course is anything but normal. It’s best to catch things early.

God’s timing is perfect. He does not control the disease. He is not responsible for the disease. The disease just is. However, He has made many amazing blessings happen with timing, with how this disease has played out, with how things always come together, and the list goes on.

11750625_10206263656222988_4073803276359594511_nWith that said, I just had the perfect two vacations with my beautiful and amazing wife as well as my children. These vacations were right before this news. Why does this matter? It matters because I experienced these memories as a father and husband who was NED. That is crucial. I experienced them without the thought of cancer. I was able to laugh, run, swim, and hike without a disease care. Literally, it was as if it was just a nightmare, and we were waking up to a beautiful reality.

Furthermore, we already have appointments with my neurosurgeon, oncologist and radiation oncologist in a few days. I don’t have to stress and scramble as I have done in days past to formulate a meeting of the minds. I can relax. Yes. Relax knowing that we will be at the drawing board soon making a master battle plan. We will win the war. It’s just another battle.

Please pray for nothing to show up on the MRI next Tuesday (August 4, 2015). Please pray for peace, for options, for treatments that work, and for my family. Please pray for a long life with my family and friends.

We love you all, so very much. Hug your loved ones a little tighter for us tonight. Make memories. Forgive.

Thank you for being with us no matter what.

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Finally N.E.D. Again!

June 2015 scans1 June 2015 scans2 June 2015 scans3Thank you for all of the amazing notes and messages today. It was truly a stressful time with 3 consults and 2 scans within 1.5 days. We are now at the airport about to head home! I cannot wait to be in the arms of my family.

With that said, please take a moment to say a prayer for us. A prayer of thanks. A prayer to say thank you for providing such an exemplary medical team. A prayer to say thank you for another amazing results. To our surprise, both the MRI and PET scan were both read. The reports are still preliminary, but they both read no evidence of disease. NED!

We came. We saw. We fought. We conquered again, and we could not do it without you all!

It is truly a miracle, and only God is capable of performing such an amazing feat against such a horrible disease. We are far from being in the clear, but we have the upper hand again.

I will be going on treatment again, and it will most likely be immunotherapy. Since I do not have an active tumor to biospy, we are going to test my last tumor for specific genetic markers for different immunotherapies.

We have this. Let the fight continue! We love you all so very much. Time to celebrate and fight harder!

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Gamma Knife III

11133795_10205685153400779_8846874568860267315_nApril 30, 2015 6:22 am
All checked in and waiting in the bellows of MD Anderson to be called. One of the only times I’ll be really early for a treatment as it could help my chances of being the first patient!

I was talking with my wife on the way over, and I told her it was like taking the long walk of shame. She said sorry I had to do it alone (I came alone…my choice, Andrea will be coming later this afternoon).

I told her everyone takes the walk alone otherwise you’re just going out for breakfast. No shame in breakfast! tongue emoticon

Thank you for keeping our minds busy with all of the beautiful and heartfelt texts, emails and messages. Since I am alone, I’ll update when I can probably in this thread to make it easier.

9:57 am
Halo is on and MRI is all done. The MRI took longer than usual because they had to do extra sequences because it is so small.

Great news is it (the disease area) still remains very small. They just called up to my floor and are coming to take me down to surgery.

It’s going great so far! Thank you for the continued prayers! We love you all!

11:51 am
All done! Finished a little over an hour ago. It was only a 14 minute procedure this time. Shortest one yet! Looking forward to the days of 0 minute procedures because I’ll beat this thing! wink emoticon I have to be monitored for complications until about 1215 CT, and then I can be released!

It’s been a great day so far! Thanks be to God for always taking such great care of us and for assembling the most amazing medical team imaginable. We are blessed!

I also had the amazing opportunity as a “veteran” GammaKnifer to talk with an elderly woman who was very nervous. So nervous that she was on the brink of having to cancel her GammaKnife because of elevated blood pressure.

With that said, we had enough time to chat. I asked her what she was nervous about, and we spoke about how the whole process goes. I told her out of all the treatments and procedures this was the easiest to endure, and more importantly, it works! I chatted with her about how the treatments won’t always be easy, but they will always beat the alternative. We both have so much more life to live. Not sure if it helped her or not, but we laughed at the end. And she is currently getting her GammaKnife.

In life, use what you know and have experienced to pay it forward. Nobody fights alone!

We love you so very much!

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Gamma Knife III

11095082_10205677858818419_493213107_nTime flies when you’re having fun! First and foremost, being off of chemo has been an absolute blessing! The energy rebound has been remarkable. We hoped and prayed for clear scans in order to stop chemo, but that will happen in time, again!

Traveling to MD Anderson today and staying until Friday. GammaKnife is scheduled for tomorrow morning. As has happened with all other GammaKnife procedures, there is a pre-procedure MRI to not only map out the exact, precise location of the lesion, but to determine the status of the disease. Please join us in praying for a miracle and no disease shows up! Please pray for stable disease if it is still present and equally as important, please pray for no NEW lesions showing up. Please pray for a very successful procedure, and for peace of mind.

We love you all so very much, and thank you for all of the messages as always. You are truly amazing!

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2015 Troy Angiosarcoma Run/Walk

2014 Troy Angiosarcoma RunTo all of those who have supported and planned to attend the 3rd Annual Troy Angiosarcoma Awareness Run/Walk next month, we sincerely apologize for the lateness of this update. We realize that the race was suppose to be soon.  We meant to get this email out much sooner, but Ryan’s health has taken an unexpected turn requiring surgery.  Rest assured he will be better than okay, but for this reason, getting an event update out to you has taken some extra time.

After strong consideration and discussion between the two of us, we have decided to postpone the event until next year. Requests & demands were asked of our event that were not feasible in the time-frame allotted nor did they fit the design, layout, and overall structure of our event. To relieve stress, anxiety and tension, we ultimately and with great sadness decided upon postponing to regroup and revamp the race. We have our hearts set to hold the event in 2016 and we promise to keep you informed.

We want to thank you for your support the past 2 years. Because of YOUR SUPPORT we raised more than $46,000 with a total profit of $33,000. Those funds went DIRECTLY to Angiosarcoma Awareness, Inc. to be used for research.

If you have any questions, concerns or anything, PLEASE do not hesitate to contact Melissa Chinn. You can reach her at info@eyeonyoudesigns.com. At this time, we are encouraging Ryan to put all of his focus on his family and his health. We invite you to continue to keep up with his treatments and progress as he travels to Houston at the end of April for another Gamma Knife operation on his brain.

Thank you!

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It is STILL Another Birthday

april152015Sorry for the delay, and nobody wishes it were better news than me. Unfortunately, it’s not. This disease seems to be progressing, albeit slowly for the most part, but progressing. It’s not going to be the birthday we had hoped and prayed for, but it IS still another birthday. There’s something to say about that. One year longer is one more year of memories.

With that said, the new lesion is in the left frontal lobe whereas the other lesions were all in the right hemisphere. The report is attached to this messsage. As it reads in the impression, it is not entirely accurate. My clinical history and how it initially presents on MRIs is very important. These facts coupled with the fact it is showing in the left hemisphere which wasn’t present on the last MRI is troubling.

I needed a break. You have no idea how much I needed a break. I am a broken and beaten down man right now in many ways, but we shall fight on. We have no choice.

I have to undergo another gammaknife procedure. We waited around the clinic for awhile to see if they could fit us in this week, but it didn’t work out. We are now headed home, and will regroup tomorrow. As far as treatment, I have to discuss this with Dr. Ravi on how he wants to move forward. I promise to keep you all updated.

Please continue to pray, hard, for a miracle again. We love you all, and we need you more than ever.

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A Birthday Wish

Hello family and friends who love and pray for Ryan ~

Yesterday, April 13 – Ryan had his 67th round of chemotherapy. He is such a fighter. Today he is in Houston meeting with is medical team, and having an MRI on his brain to ensure that the chemotherapy has been working to keep the disease away! Results will be given tomorrow.

I think it’s fitting that one year ago today, he posted the below post. It’s a good reminder that even through all that he has faced in the last 5 years – he still maintains a positive attitude, a clear outlook on his future and a dedication and love for his family like none I have ever seen before:

What makes me happy, especially over the course of the past 5 years of fighting, is the coming togetherness of people. It’s not just for me, it’s for my family, but it still doesn’t stop there. The people and world I know are of friendship, compassion, love, understanding, respect, humility and strength. The vale of the web and anonymity of the internet creates a personality that isn’t real. People aren’t what is portrayed on the news, nor are people who fight, argue and thrust insults on FB or elsewhere really that way. Yes, we all say dumb things, but we learn. We learn from each other time and time again. If life were easy, it wouldn’t be called living.

In life, real life, people are reserved, respectful and full of compassion. This is the world I know. In all honesty, I don’t think it’s the cancer or my words or any person’s journey. We are led to believe we live in a world full of heartless creatures who have no understanding towards another. This fast paced world has us believe we only think about ourselves. I disagree, and that is not what I see every day. I mean, actually SEE and witness. We are a good people. Don’t ever forget that.

The support network I have is astounding, and it literally humbles me to my very core. It creates a sense of euphoria that not only assists in the mental battle, but the physical battle as well. It creates a situation where I have no choice but to keep moving forward against whatever odds I come across. From initial diagnosis, to rounds of chemo, to surgery, to brain radiation…. I never had a choice to give up. I never had a chance to second guess my drive to succeed and win against cancer.

Lord knows I was beat to a pulp many times by negative news. I have cried more times than I can count. I have held my family so tight and close so many times thinking the worst possible thoughts of death and a life cut short. Through the grace of God and through the love of the people in my life, I have always and am always able to get up, lift my head, and march forward. Together, we have always been in this together.

My happy thought today is the culmination of every single time I have been knocked down, and somebody has been there to help me out. I won’t give up. I cannot give up. For that reason, I am alive in every sense of the word.

Thank you for always sharing you. I love you, the lives you lead, and the love you show. This life is worth fighting for. Always remember that. (April 13, 2014)

Please continue to keep Ryan, Andrea, Landon and Logan in your thoughts and prayers as they go through the next 2 days of doctor’s appointments, scans, blood draws, etc., and GOD WILLING, for Ryan to have the best birthday gift he could ask for – celebrating his 33rd birthday on Thursday, April 16th  with No Evidence of Disease!!!

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Birthday Gift – Part 1

CT scan 03-2015Good afternoon, and a VERY happy Thursday to all of you. Part 1 of a 2 part birthday p
resent wish has been filled, thanks be to God!

NED!!!!!!!!!!!!!!!!! Clear scans. No evidence of recurrent or metastatic disease in my chest, abdomen and pelvis! smile emoticon

Life vs. Angiosarcoma – life is winning for us. We are blessed beyond measure. Thank you for loving and caring for us so much and for SO long. It’s an incredible day at our house, and we look forward to Part 2 of 2 next month with my MRI on April 14.

Every time this happens, we get a new lease on life. The feeling is exhausting, incredible, and miraculous.

We love you all, so very much.

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Starting 2015 NED

10425491_10205025616832777_3877645765900042513_nExhausted, but we made it to the airport safely and on time! And…..with GREAT NEWS!

I remain cautiously NED, but NED!!!! What.A.Relief! I cannot begin to explain.

Dr. Li was running 45 minutes behind which caused us to be behind with Dr. Lang. After we finished with both of them, I sent a last ditch effort to Dr. Ravi to see if he was available. Fortunately, he was! We met him in his academic office, and we all hugged with great relief and celebrated the moment! We have been blessed with the most amazing medical team with the most amazing expertise at their disposal. God is good, always. 2015 is shaping up to be a very blessed year.

The plan is to continue on chemo for the short term. Dr. Ravi said 4 months is the limit he’ll go with me on Temodar. He has had patients, especially younger ones, develop leukemia as a secondary malignancy. In case you didn’t guess, we desperately want to try and avoid that situation. 😉

We will be on our way home shortly, and we couldn’t be in better spirits. Thank you God for these life lessons, and getting us this far. Thank you, all of you, for keeping us so close to your hearts.

For those that can make it out to the wine fundraiser this Saturday for our family, we cannot wait to hug all of you, thank you in person, and raise a glass with you to celebrate this amazing year!

We love you.

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First Scan of 2015

Good morning and a VERY happy Thursday to all of you! We just received the phone call and subsequent fax regarding my scans yesterday……

N E D!!!!!!!!!!!

I cannot think of a better way to start 2015 than with the gift and breath of life. I cannot begin to describe the feeling one gets from something like this. There are truly no words to describe it, and trust me, I like words! smile emoticon

One scan down, one very stressful and difficult MRI to go next Tuesday. Unfortunately, the MRI from this time last year is what started it all for 2014. It will NOT be the same situation this year.

It’s going to be the best year yet!

Thanks be to God for giving me the body to endure a tremendous amount, the superb medical team to help defeat this, and the support group that can change the world. Such a miracle this all is……

Thank you for all of the love and prayers. We need them so very much. Houston, look out! Here we come!

Have a very blessed day. We love you all!

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Barre Class Fundraiser (Feb 9)

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Burn Bright with the Dailey Method under the chandeliers of The Townsend Hotel ballroom!

Details: Please join us for a special 1-hour barre class in the newly renovated ballroom of The Townsend Hotel. Come early and stay late to network. It is a night to connect – your mind, body & spirit will thank you.

Monday, February 9, 2015
Doors open at 5:00 p.m.
Class begins at 6:00 p.m.

  • Live DJ provided by Star Trax
  • Stay after to enjoy a Skinny cocktail and sample a heart healthy salad from the Rugby Grille.
  • Wear yoga-style apparel and bring a mat if you own one.
  • Every attendee will receive a gift bag filled with an Endless Bracelet + charm and many other great surprises!

Purpose: Though exercise is good for our hearts, we are also joining together to fill the hearts of a very special family. Ryan Humphrey is a Troy native who is battling Angiosarcoma cancer that attacks the inner lining of blood vessels. A large portion of the proceeds of this event will go to Ryan and his family to help with mounting medical bills.

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Ticket cost: $50 per person.
Complementary coat check available upon arrival.

Main Contributors: The Dailey Method, The Townsend Hotel, Star Trax, Darakjian Jeweler and Lululemon.

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