Round 38 Today

Saturday night bonfire with the family.

Saturday night bonfire with the family.

This past weekend, we spent Saturday evening doing my favorite thing: a bonfire with the family in my backyard. On Sunday we spent the day at Crossroads Village and Huckleberry Railroad.

We made more amazing memories as the family that God has blessed me with, and this morning, it is those memories I grasp as the treatment of this disease continues.

Today, I begin my 26th round of Taxol for a total of 38 rounds of Chemo. To date, I have endured 4 rounds of AIM (Adriamycin,  ifosfamide, mesna), 8 rounds of Gemzar/Docetaxel, and 25 rounds of Taxol.

It’s been 11 months since I’ve last had this chemo. It is amazing the routine I had established especially for this regimen. Decadron, zofran, emend, hypothermia mittens and boots, dry ice, ativan, EMLA, etc! Took awhile to remember everything, and I had to set multiple alarms!

We have a very steep hill and very long and tough battle ahead of us. My case has been anything but normal. Please continue to pray for us!

Thank you for all of your heartwarming messages, texts, phone calls, and notes – and especially your thoughts and prayers.

It’s go time! Today, we bring the battle to the doorsteps of this insidious disease. Today, we lock arms and march forward in full battle gear. Today, we fight back.

We love you all, so very much!

4 rounds of AIM, 12 rounds of Genzar/Docetaxel, and 25 rounds of Taxol
Posted in Treatment Progress | 3 Comments

A Path Less Traveled…..

Throughout my life with what I have been taught and through self reflection, I always wanted my home to be a sanctuary. A place where no matter how hard a day has been or how much despair life has bestowed upon me, that once I step foot inside, by the shear thought of seeing my wife and sons, that all is not lost and life makes sense. It happens every time.

We leave our problems at the door, and just love each other.  It’s like a tidal wave of grief, sadness, stress, anxiety just washes down from my shoulders through my body, and out the door. A weight is lifted. A new life and fight has begun. I have been blessed with an extremely formidable army of supporters in my life spearheaded and lead by my amazing and beautiful wife. God has blessed me beyond comprehension, and I strongly feel He continues to give me all of the tools and firepower necessary to slay this dragon. We beat it before.  We will do it again.  It’s great to be home.  I missed my family dearly.  It’s been a very grueling and exhausting week, and the plan still isn’t quite put together.  My case is complicated, and the steps forward have to be carefully calculated by all parties.  There is a very clear and present danger within my brain, and it needs to be addressed.

On a separate note, to help clarify things, I did have a clear scan 2 weeks ago with my PET/CT. Think of it as I have two fronts (Brain/CNS and the rest of my body) that I am facing and fighting, and every month or two I re-stage both fronts. The PET/CT scans are to address my body minus the brain. We had amazing news with that scan, and it was a huge relief. Unfortunately, it was quickly followed by a devastating MRI which revealed two new lesions. Although they are small, they are very worrisome. My emotional peaks and valleys are getting much more steep and are taking a much larger toll, but we will get through it.

Click here to read the most recent MRI report.

The options are plenty, but the choice is complicated and stressful. We are going to do GammaKnife surgery again, and it is scheduled for next Friday, July 25. My medical team did everything in their power, from contacting heads and chiefs of departments to researching when certain people will be back from leave and vacation, but it just didn’t work out in the end. They don’t seem concerned, but they are not me. Normally, a week of waiting wouldn’t be that big of a deal.

However, the approach this new lesion has taken from nothing 4 weeks ago to 1.6cm today is unprecedented in my case. My specific disease has always been a slow grower, but this is definitely not slow. Waiting another week could mean another 25% or more increase in size (since it took only 4 weeks to get to this point), and possible other lesions arising.

The neurosurgeon and radiation oncologist both agree that whole brain radiation therapy (WBRT) should not be used right now. They feel the side effects, both short and long, are not worth what benefits we may get. With that said, Dr. Ravi had two approaches or paths once we knew their opinions. First, if we did GammaKnife (SRS) followed by WBRT, this would hopefully take care of the brain, and we wouldn’t have to be as selective with chemos that may or may not cross the blood-brain barrier (BBB). However, it seems the more complicated approach by treating locally in the brain, but not the brain as a whole.

Now begs the question – what chemos (and there aren’t many) could effectively cross the BBB while being highly effective against angiosarcoma? That is what Dr. Ravi is currently trying to figure out through research and consulting with other doctors. I will start chemo again, but the type, combination and regimen is unknown.

In the past, we have discussed immunotherapies and other experimental drugs to possibly help fight off a disease that may or may not be there. However, it is Dr. Ravi’s opinion that since we have active disease, we should go with something that has worked in the past. It is a theory that whatever chemo I was on before was either holding off the disease, or trying to eradicate it completely. Currently, it is between taxol (my last chemo) or gemcitabine/docetaxel (my second regimen). With either of these, we are considering adding another drug for better BBB penetration.

Long story short, I have GammaKnife next Friday, July 25 in Houston. I will have chemotherapy again, but we just don’t know what yet. Hopefully, we will have a decision made soon. I will keep you updated, as always!

From the depths of my heart and soul, thank you for being in my life and enduring, yes enduring, all of these trials and tribulations along with us. It is no easier for you to read about someone’s suffering than it is for someone to go through it. It’s emotional for us all, and thank you for your courage and dedication to stay by our side no matter what comes to fruition.

Life is what you make of it, so make it count each and every day. I have learned so much about life, love, friendship, patience, understanding, and commitment. I have learned many lessons I would not have otherwise. I have been given 5 years and counting of a life I love. I have been blessed with remarkable triumphs, and somehow a body that is capable of withstanding many deadly assaults.

I pray your life is as blessed as mine. I pray you see all the good you provide me and each other. I hope you know the beauty you possess, and the true power of prayer; the true strength in numbers; and the true meaning of love and selflessness. You have taught me to live. You have taught me to love. You have taught me that my family will be taken care of no matter my result. My family is everything to me, and that is an enormous burden you have lifted from my shoulders.

Now. We fight, and fight we shall.

I love you all so very much. You are everything to me, and we could not do this without you.

Posted in Treatment Progress | 9 Comments

Bad Scan Results This Time: Prayers, Please

It’s been a very long day. Sadly, I have horrible news. The spot that was seen on the last scan has grown and become more defined.

Even more horrifying, is that there is a larger spot that grew from zero to large in a matter of 4 weeks time.

I had the schedule wrong, and my appointment with my neurosurgeon wasn’t until tomorrow. Thankfully, his NP is amazing and called Dr. Lang in the OR. He answered, and reviewed the scans. He was obviously not liking what he saw.

So now, we scramble for appointments. Since it grew to almost 2cm in 4 weeks, time is not on our side. I am keeping my original appointment with Dr. Lang (neurosurgeon) tomorrow, and have scheduled an appointment with my radiation oncologist (Dr. Li), who happens to come back in from vacation later today. We will then scramble to set up a gammaknife procedure as soon as possible, hopefully later this week.

I’m actually very scared this time around. It’s growing and spreading quickly. We need to stop it here. I also have a suspicion that it is being fed from somewhere else in the body. Brain lesions of AS don’t just show up out of nowhere.

So, the good? Thanks be to God, once again, for all of the little things: Dr. Ravi insisting on a short interval MRI (who knows how large it would have been in another month), thank you to me for messing up my schedule (it allowed us to get preliminary results today, and get the ball rolling for surgery), and thank you for my beautiful life, wife and children.

For now, I am scared. I am crying. My life is in a big cloud, and I cannot even think about Andrea and the boys – it just hurts my heart too much. I just want to crawl into a hole.

Please pray for a miracle, and pray for my family.

I love you all.

Ryan

Posted in Treatment Progress, Uncategorized | 10 Comments

Delayed Scan with Great Results

I was originally scheduled for a PET/CT with contrast (this allows the CT portion to be diagnostic as well as the PET portion) on Tuesday, July 1 locally in Michigan so I could avoid the travel and time away from my beautiful family. Unfortunately, the scan was postponed until Thursday, which of course, was followed by the 4th of July holiday. st me, I tried using all legitimate avenues of gaining the results, with no luck.

And so, we had a fun-filled day/weekend planned with grandparents, nieces, nephews and neighbors. As hard as this is for someone like me, especially being a part of the generation of now and information always available, we went ahead to heed the advice of friends and family to wait until Monday.

And worth the wait it was!

4th of July 2014Best. Decision. Ever. We had an absolutely amazing and beautiful weekend filled with many memories of laughter and love all across the board.

To top it off, my scans came back CLEAR!!!!!!!!!

NED!!!! I am so unbelievably happy. Tears.

Below are the official results that were sent.

Ryan-scans07-2014Ryan-scans07-2014-2

I am still in pain, but who (insert explicative) (go ahead and add another for good measure) cares!! I can deal with that if it means I will live to see my children grow up and if it means I get to grow old with my beautiful and amazing wife. It will need to be addressed, but in time.

I was literally petrified about these results. Absolutely terrified. Thank you, God, for your mercy, healing, and lessons of patience and submission to your will.

Please do not stop the prayers. We have my short interval MRI next week on Tuesday, July 15. This is the never-ending month of scanxiety. My body is exhausted. However, if these scans come back clear, it will be the BEST SUMMER EVER!!

For now, we celebrate this miraculous and amazing news.

My body, as of now, is cancer free!!

I love you, oh so very much. I cannot tell you how impossible this would be without your love, support, and life stories. You. Are. Amazing.

Posted in Treatment Progress | 8 Comments

Something’s gotta give…..

Good evening. I might as well write this, and get it over with. I’m exhausted and overwhelmed. It’s been an extremely long 5 years of battling this disease. Fatigue, stress, anxiety and nerves sure do compound over time. How many times does one have to be knocked down? Can I not just enjoy my life that I love? 5 years….and going. Something has to give eventually, right?

We’ve been through a lot, and unfortunately we aren’t any closer to being out of the woods. Dr. Rapson (my local oncologist here in Lansing) called me from the hospital. I asked her to call me when she found any news, and she did. First, there is no official report, but she decided to go and sit with the radiologist to view the MRI.

The spot I had radiosurgery on (Gamma Knife) is still there. This could mean many different things, especially since she couldn’t tell me exactly how it contrasted in the imaging – different contrasts mean different things – blood old and new, scar tissue, etc. It isn’t larger so that is a great thing.

The most troubling thing and one that is the most devastating is that there is a new spot near the previous one. Without an official report, I cannot get a true understanding of its description. Dr. Rapson said it is very small and indiscriminate, but worrisome. She seemed reserved about it, but said I should see my neurosurgeon soon.

This finding has many implications. First, it means the original spot most likely without a doubt is/was angiosarcoma. There was a glimmer of hope it was a more benign cavernoma, but this is proving to be false. It would have made a world of difference. Second, disease in the brain takes almost all clinical trials off of the table as well as many standard therapies due to the seemingly impenetrable blood-brain barrier. It leaves us with very few options if we cannot get stable or no disease from here on out. It’s very scary, and I am so very tired of all of this.

I was so very excited to go camping this Wednesday. This is crushing me. We still have a lot to figure out, but we are heartbroken right now. It just feels like I am dying slowly, and this disease is toying with me. You might think “slowly” is a good thing in order to get quality time in, but it is excruciating to continue to go through these gut-wrenching decisions on my life, time and time again; to continue to visualize my wife without me; to look at my sons and their innocence, only to dread what may be coming for them losing their father; to watch them play, laugh, learn, cry, and just want to be with me, knowing their worlds could shatter. It’s horrendous.

I play “death videos” in my head on what I want to say, what lessons I want to teach that I won’t be there for, what life memories will be made without me being around, how it is okay to go on with life without me…..this happens to us all going through this – we just never, ever want to have to do them. It is the most awful pain to force yourself to go through, but in order to get it done, I would rather do it sooner rather than later. However, in my mind, doing them admits that the end is death, sooner than later. It’s a whirlwind of emotions. So, yes, this delayed suffering is amazing to spend time with my family that God has given me, but this is the 5th time my mind and body have to go through this, and it’s not even a physical pain.

I am exhausted.

What now? We do what we have to in order to survive. At this point, I am not even sure what that means. I don’t have the final report yet, but it doesn’t sound promising as far as any chance at a good report. I’m also waiting to hear back from a few people in my life who are reviewing the images as well. I have had an appointment scheduled this Wednesday for a while with my neurosurgeon at MD Anderson, Dr. Lang. I kept that appointment for this very reason. I also overnighted my scan images to MD Anderson before knowing the results for the very same reason. Instead of camping Wednesday to Sunday (on a trip we have been looking forward to for so very long), I will be traveling to Houston for my decisions on my health, life and future. I am truly and utterly destroyed right now, and there isn’t much life can do. I’ll pick myself up as I have in the past. Adversity and despair are not strangers to my life, but neither are miracles, hope and courage. We will get through this.

As for silver linings and blessings, God has granted us some as always. It’s not wide spread. It’s very small. The other spot didn’t grow. I kept my appointment with my neurosurgeon still. The ducks are all in a row to get a plan going quickly. I am still alive and well, and physically able to do just as much as I have before. Hopefully, I should make it back home by Thursday or Friday to spend some time camping with my family still. We will get through this.

Please pray. Pray for guidance. Pray for control of this disease. Pray for an answer and a plan. Pray for safe travels and peace of mind. And pray for my family’s safety as they go camping without me. Please pray for an unremarkable PET scan in less then a month (beginning of July).

For now, we just need some time alone as a family of four. Thank you for continuing to love us all unconditionally. We have yet another battle to forge in this never-ending war.

We love you.

Posted in Treatment Progress | 32 Comments

How did we get here?

I know.  I’ve been quiet.  I do want to say thank you to all that continue to reach out to me regardless of my level of updates and responses.  To reach out and not expect much in return, is selflessness at its greatest level.  It’s caring and loving unconditionally.  It means the world to a person, especially someone in my situation.  There is a lot to talk about, but not much to say if that makes sense.

For those who don’t want to or have the time to read below, we need your prayers.  I  have my first significant, post Gamma Knife MRI of my brain next Monday, June 9 – two days after we celebrate our Logan’s 2nd birthday.  Please pray for guidance if the scans are not favorable.  Please pray for peace, comfort and relief from pain and anxiety.  Please pray for a brain lesion no longer present as well as no new lesions.  We will update when we know the results.  Thank you for your love and support.

It’s a psychological warfare presented by a Groundhog’s Day-like appearance.  It’s a daily struggle with the unexplained pain, notion my doctor doesn’t believe the disease is gone, “disease-free” representation by scans which is only macroscopic in nature, and the constant smiling because my life is absolutely beautiful and the fear it could all change, again.  I hide it, and I hide it well I think because it is not what defines me.  However, this is a far cry from it not being present every second of every single day.

The constant:

1  “Am I doing enough spiritually, emotionally, physically, and planning ahead?”

2  “What have I done to deserve this?  Where did I go wrong in life?  What can I do to improve?” – these three are questions with no answer.  They are somewhat rhetorical and self-reflecting – these two questions are at the very root of every person suffering because they are what keeps us grounded and in the moment.  They are the ones that allow us to be appreciative of the good and bad.  They are not morbid in their entirety.  Instead, they are ways, at least for me, to ponder on how can I better myself through adversity.  I am trying, every day, to set an example for my family that life is what you make of it.

3  “Will my children grow up without their father and my wife without her husband?”

4  “What is this bruise?  What is this pain? Can it be replicated?  Palpated?  How long has it been there?  Has it changed?  I have a headache, and it isn’t in the same location.  What does that mean?  I have LUQ, RUQ, LLQ, or RLQ pain.  Why???”  – these are what we face all the time.  They are unavoidable, and we always visit the darkest place with the darkest thoughts.  They are topics that we just brush under the rug and hope they resolve themselves.

It’s scary.  Everything.  Especially being off of treatment with a disease personally known to be slow but persistent; a disease not believed to be gone, but nothing we can do as far as treatment because of lack of measurable disease; a disease known to be dormant, and seemingly strike when I am able to move on for a moment.

I thought this would get easier with time.  These scans.  These consultations.  The waiting and stress and anxiety.  It hasn’t, and it’s a lot worse.  We don’t feel it’s gone so suffice it to say it feels like a ticking time bomb.  It’s like playing Russian Roulette with each scan – not IF this is the bullet, but when.  For the first time, I hope and pray that the doctor we so much respect and hold to such a high regard with his expertise is 200% wrong.  I hope his notion is just a guess and a wrongly felt gut instinct.  Time will tell.

Please continue to pray.  It’s such a blessing being off of treatment.  Besides the anticipated daily chronic pain and other anomalies that I attribute to my highly invasive surgery, life is amazing.  I don’t say normal because what is normal?  Who defines it?  No two lives are the same, and the term itself for any individual is fluid and dynamic.  It changes from week to week, and even day to day.  Truth be told, this is “normal” for us now.  So, I call my life amazing, blessed, and wonderful.

Why the lack of updates?  It’s simple.  The inability for me to portray what is going on in the inside while painting a picture about what is going on in life as a person interacting with the outside world, including my family.  It’s very hard to truly explain what this second life is.  A diagnosis of any life threatening ailment is a rebirth of who you are.  It literally and figuratively destroys your previous life.  If given the opportunity, you spend the rest of your new life trying to cope and experience life in a different light.  Daily struggles and pain become routine.

Updates, to me, are meant to update.  It is my chance to lay it all out there.  It is an opportunity to let you know the physical, mental, and spiritual turmoil that is going on.  Unfortunately, these are merely descriptive words describing a highly emotional and physical situation – one in which I do not let define me.  It’s not how I live my life.  It’s most certainly not what controls my day.  God has been very protective of us, and like everyone, I am truly indebted to God for the 5 years of second life He has given me post initial diagnosis.  I continuously and without hesitation pray and beg for many more opportunities to live.

These updates are the truth, and I will always give it to you straight.  It is important that who I am outwardly and what I am experiencing/dealing with internally are separate and distinguishable.  I cannot deny the fact that this is extremely hard, devastating and exhausting.  I cannot sugarcoat the situation nor can I pretend that life is always inspirational, uplifting, and full of defining amazing moments.  It wasn’t this way without this disease.  How could it possibly be any simpler with it?  Rather, life is appreciated and welcomed; it is accepted as a gift no matter if it is a really good day or a really bad day regardless of the reason.  We pray for another day, and when God grants us this day, it is very important to appreciate the day for what it is, and not for what it brings.  I’ll take a week of pneumonia with one lung, two kids with viral and/or bacterial infections, and an exhausted wife taking care of us any day over the morbid alternative, and I say this with experience since we just went through this – twice.

We have been given another day today, and it is up to all of us to love it and live it no matter what is thrown at us.  Life was never promised to be easy.  It was promised to be gifted and full of opportunities to learn, to grow, and to share our lives.  When we complain about a bad day, or a bad week or even month or year, are we ultimately saying that we don’t want this?  It’s a very hard concept when a loved one is lost, and I cannot imagine the lifelong grief.  However, I hope and pray that should this disease take my life that those continuing on in my stead realize that I am just a small piece to a very big and complex puzzle; that life does and will, and must, go on.

Every day is the beginning of a new life.  Death, disease, hurt, and pain from yesterday cannot be undone – it is an absolute fact.  What ever happened yesterday are pieces for the days ahead and how we shape the world for ourselves and those around us.  Some pieces are much bigger, much heavier, and carry life altering emotions.  Some pieces are smaller, lighter and slight redirects.  Regardless, they cannot be undone, but learned and reflected upon.

We love you all.  You are family to us, and we care about you so very much.  Thank you for being on this long journey with us.  We hope and pray it becomes a very lengthy journey for many years to come.  Thank you for being in our lives, for praying, for understanding, and for continuing to support us financially, spiritually and emotionally.  You define the phrase “angels on Earth”.  Thank you!

Posted in Uncategorized | 14 Comments

Scare and Scans

Last night, April 13th, we had a scare. I was (and still am) in a tremendous amount of pain, so we went to the ER. My pain was so bad that not even 800mg Motrin was helping at all.

My next round of scans were suppose to be this Thursday, however, I was scanned in the ER last night.

scans 04-13

By the amazing grace of God, my scans came back clear. I still have to control this pain, but the adrenaline and endorphins will carry me through right now.

Thank you, so much, for the prayers and thoughts and texts and messages. So amazing to read them all while I sit here.

I love you all. I really do. I really, really do!

Posted in Uncategorized | 4 Comments

An Update On Life

Good afternoon and thank you for your continued love, support and prayers. I am extremely sorry about the delay in posting, but it has become increasingly difficult to update during daylight hours with an almost 4 and almost 2 year old running around. My immediate family has been waiting as well. Please forgive me!

It goes without saying, it is a fact and utmost necessity to share one’s plights with others. It not only allows a person to vent, but it also allows for the opportunity to help each other. It is amazing what sharing our lives with all of you does for our journey. We have met and continue to meet so many amazing people.

For those with not much time to read it all, it was an overall positive report. Thank you God for keeping us safe. Thank you God for answering our prayers. Thank you for continuing to allow our trial to be a testimony to your mercy and grace. As with everything in my case, it’s all inconclusive at the moment, but all findings point to a miracle, again. It is important, as always, for us to tread carefully forward. I am planning on doing some very aggressive therapy (immunotherapy – IL2). This scan was vitally important in making that possible. It was the first step of many to get it going.

It’s also important for me to go through my reports for those who are curious. It’s always important to know that lengthy and wordy reports aren’t always bad. We must learn to read between the lines and not be overwhelmed with medical talk. Unfortunately, we all will be touched by unfortunate medical circumstances either personally, or through a loved one. It’s important to prepare for battle years before it happens. I want to help out as much as possible!

Although I wish very much I could say there is nothing present on the scan, it is again not entirely the case. To understand disease and treatment modalities, you have to understand that measurable efficacy takes time to be discerned. With that said, here is the report from the MRI for those who do not have time to listen to me ramble (although you may need to listen to my explanation to understand an MRI – which, I’ll admit, I haven’t a clue what some of it means).

Click here for report: March 10, 2014 Sparrow MRI Radiology Report

Immediately following the scan, I had them make two extra copies so I could overnight the images to both Dr. Tap and Dr. Ravi. USPS tracking says they arrived. Hopefully, we have their opinion soon.

We received the report this morning, and yes, Andrea and I looked at the scans yesterday. We knew there was something present in the same spot, but we wanted to wait for the report to announce anything. Although we knew there would be a remarkable finding, we didn’t know how to interpret the scan comparisons without an experts opinion. There are subtle differences in intensity, tumor appearance and contrast uptake. These differences all seem to point in the direction of tumor death.

The report impression and Dr. Rapson’s opinion are very favorable to a great treatment response. The intensity of the tumor area has decreased- this means it is less obvious as a tumor and more indicative of scar tissue/necrosed tissue. The size has remained relatively the same, but we were told to expect this (inflammation and scar tissue can and does allow a spot to remain similar in size). Radiation takes time to do its job, and it could be months for us to truly know. However, things are looking great. In all honesty, two of the most important factors, especially against a highly aggressive and deadly cancer, are 1.) there are no new lesions identified anywhere 2.) I have been off any treatment for six months now. Those are both big blessings from God in the nature of what is going on.

Going forward, I hope to set in motion the immunotherapy treatment of IL2 that we previously discussed. It’s aggressive and dangerous, but it seems the data point to a very favorable response with my case of angiosarcoma. Many factors have to still align for it to happen, but a very favorable MRI scan was the first step. That has happened, thank God.

Thank you for all of your prayers. Thank you for all of your love and support. Thank you for looking after us. It has been 4.5 years of fighting, 37 rounds of chemo, 2 lung surgeries including the removal of my left lung, 2 recurrences including one in the brain, and radiation treatment. The fight is not over; not by a long shot. You only live once, and you must not lose your will to truly live.

We must lean on each other. We must accept each other for our uniqueness, diversity, passions, and downfalls. We must not judge, ever. Instead, it would be amazing to learn and embrace each other for what we can all bring to the table. We can learn a lot from each other if you approach every situation, every encounter, and every engagement with the mindset of enhancing your life by learning from anothers uniqueness and perspective instead of defensively trying to force upon the world your opinion; with the mindset of knowledge instead of judgment; with the mindset to collaborate and expand upon your world by using the experience and beautiful life of someone else.

Thank you for trusting me and allowing us to share our amazing life. Thank you for sharing you. And thank you for always looking after each other. I love this life, and everyone in it. We have a long road, but it is one where we can learn to navigate and traverse blindly, hand-in-hand, as long as we always have each other and God.

May God bless your lives, as he has ours. I love you.

Posted in Treatment Progress | 7 Comments

Prayers for Many Tomorrows

On the eve of an extremely stressful MRI, I find myself both struggling to stay sane yet remarkably capable of forgetting the possible ramifications of a scan that reveals devastating results. Why? Because I am at home. The phrase we all know so well – “home is where the heart is” – is one that has so many different and amazing feelings attached to it. For me, it is my safe zone. It is a place where I can walk through the door and instantly feel better; no matter the day I just had.

It has been almost two years since I have been able to be at home in the comfort of my wife and children during a scan. Fortunately, I am at home for this one. Brain tumors are devastating, even more so, I assume, if it is from metastatic disease. They take many treatments off the table including clinical trials. They mess with everything that is you. I mean, it’s your brain. It is what makes you, you. It controls everything you do and is suppose to be heavily protected through a barrier. If this lesion is in fact disease, my barrier has been compromised. Let’s pray it is no longer there coupled with no new findings.

I don’t wish this upon anybody. This August it will be 5 years of fighting and trying to make sense of everything. It still feels like the first day. It still feels like a balancing act of fear and joy; of pain and comfort; of life and death. I have lost so many beautiful people to disease over my journey. I would be lying if I said I wasn’t on the verge of tears every time I laugh and play with the kids, or every time I spend time with Andrea. We are stuck in a perpetual roller-coaster of emotions that will never let up. It will always follow us.

It hurts a lot. Really bad sometimes. But you pull through. You literally convince yourself that everything will be okay, and that God will take care of you. In all honesty, He has. Some days are a nightmare, but through prayer and God’s mercy, we have pulled through. Some days you don’t want to get out of bed due to pain or emotion or fatigue, but you pull through. God has given us an amazing marriage and two beautiful boys – the very reasons I am able to put one foot in front of the other and the sources of strength for this fight.

Tomorrow is a big day; one of the biggest to date. It will determine the very course of action we do next and the extent of this disease. We pray for an isolated incident of unknown cause. An abnormality that we will never know the etiology of, but we can live with that – literally and figuratively.

Please pray for an unremarkable MRI tomorrow. Please pray for comfort, peace, and understanding toward whatever tomorrow brings. Please, God, let my family and I be a living testimony of your grace, of your healing hand, and of your mercy.

MRI checkin is at 745am tomorrow morning. Scan to follow shortly after that. I should know by late afternoon what the results are. It’s going to be a long day tomorrow. Please keep us in your thoughts and prayers.

We love you.

Posted in Treatment Progress | 10 Comments

A Dream Come True, Every Single Day

Happy Birthday, My Love

Happy birthday to the most beautiful, patient, loving, caring, and selfless person I have ever known. People often say they have met the person of their dreams when speaking of their loved one. While this is undoubtedly true in my marriage, I am very blessed in the fact that she continues to inspire my current dreams. Dreams, like life, are always changing; they are extremely dynamic and are altered as time marches on. What was important yesterday, is drastically different today. Dreams become more colorful, more beautiful, more inspiring, and unequivocally, more special as life continues to take shape and certain mental molds of what “should be” and what “has been” are broken, reshaped, and rebuilt.

Andrea never ceases to amaze me in how many dreams she has allowed for me to come true. She continues to shape my life and our children’s lives in ways we never knew were possible. She can make us smile and laugh in the darkest of times. My life is complete because of God giving the breath of life to Andrea, 32 years ago. What an amazing gift to us all.

I am a firm believer in God, and as much as I hold the Bible to be true, I more rely on living testimonies of God’s grace, lessons, and glory. I have many testimonies that can only be explained by Devine intervention, and I hope to get them on paper soon. However, there is no greater testimony in my life of God’s love and grace than the love, affection, and care of my amazing wife and mother of our children.

Andrea is an angel and a living miracle. She is a miracle in the sense that she teaches us all to live and love and the way she continues to instill strength and determination in not only myself, but all those who are blessed enough to know her. It is evident in her beautiful smile, especially after being by her husband’s side while he fights cancer for an ongoing 4.5 years. It is evident in her patience and love for our children each and every day. It is evident in how no matter what, she is dedicated to the ones she loves and will do anything and everything to make this world a better place by doing what she does best: smiling through it all.

I love you Andrea, more each and every day. Our life story is an amazing one because of one amazing woman. You. Landon, Logan, and I can smile each morning because of your love and strength.

Happy birthday sweetheart. You are my everything.

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Devising a Plan

Things may just be moving at my pace again. We are being fit in with another medical oncologist concerning a trial, and hopefully with an interventional radiologist to discuss doing a biopsy.

We met with Dr. Tap briefly. Due to the uncertainty of what is going on, we are pretty set on doing some sort of biopsy. If it weren’t for the brain hiccup, we would have done this a long time ago to just know what we are up against. If I not had AS, these PET findings would be post-inflammatory. With my case, you just never know.

As far as treatment, Dr. Tap isn’t too fond on doing IL-2 alone, and we tend to agree. The problem is doing any combination would be a hard sell even though we know the efficacy would be much greater. PD-1 trials are almost non-existent for AS, and if one is there (which Yale has one), the inclusion criteria (tumor expressing PD-1 ligand) are not prevalent in AS. This doesn’t mean the treatment wouldn’t work. In fact, it doesn’t mean that at all, but the trials need some sort of marker to test against for inclusion/exclusion.

With that said, it would seem targeted therapy may be the best bet for now. In the past, I tested my tumor for any abnormalities through Foundation One, and it came back with RPTOR overamplification. This is a drug treatable by mTOR inhibitors.

Dr. Taps line of thinking is to start down a trial they are having here at MSKCC which involves mTOR inhibitors. This would entail a biopsy of some/all of my worrisome areas, staining for disease, AND sending out to MSKCC labs for a more sophisticated and specific genomic testing – in other words, confirming the RPTOR findings from Foundation One.

He wasn’t against using other targeted therapies such as Sorafinib. He did state he is very intrigued in using the mTOR pathway because patients with AS have responded very well with this treatment IF they tested positive for the abnormality.

In short, we have an appointment with Dr. Gounder (sarcoma medical oncologist), in a little less than an hour. He is the PI for this study. Furthermore, we are hoping to get an appointment with an IR (interventional radiologist) specialist to decide how/where/when to do the biopsies. They know we can do them ASAP and want, so lets hope it can be done today or tomorrow. Ideally, I would like to biopsy every area of concern.

Hopefully things move quickly so please voice your opinions as soon as possible before it’s too late. This may not all make sense or seem like much, but we are at the very least making some progress in doing something..anything! Please, if you have questions, let me know.

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Interval Scan Results

First and foremost, we begged and pleaded to God for this. So yes, we must thank Him first. For the most part, it is what we had hoped for! It wasn’t a slam dunk by any means, but it wasn’t devastating either. I’m reserved in my emotions, but also very happy! Prayer is powerful, time and time again. We might just be ahead of this disease once again. Third time is a charm, right? Thank you God.

Consult reports are also attached. The case is very frustrating, confusing, and inconclusive. We don’t know what is going on, but if everybody is on board, I do want to treat whatever is or isn’t aggressively. I want to live. He kept calling it stable pleural disease, but then went on to say normal protocol calls to wait and see. The report reads different (after all the words, it somewhat reads NED), and for a PET scan, it is a good report.

The reports have a lot of words, so I will go over the “Impressions” section. All in all, it is a very positive report.

Impression 1: This is and always has been the most concerning. It is the pleura and what tested positive on frozen and negative on permanent pathology from lung surgery. It is still very concerning. However, it is very low in uptake and almost immeasurable on scan. As Dr. Ravi reported, it’s microscopic and small, which are very good things if this is disease. The increased uptake noted is most likely stable as it was obscured from the scan last time due to my left ventricle in my heart (remember, my heart is shifted down and to the left). All areas to be watched VERY closely.

Impression 2: This once again is most likely the thymus. It is very reassuring that not a single thing has changed. Most likely benign and reactionary thymic tissue.

Impression 3: The nodes that were of elevated concern on the last PET scan have decreased in activity. This most likely suggests a benign, inflammatory condition.

Impression 4: Excellent news! I just received Gamma Knife, and now the lesion is undetectable!!! Thank you God. However, my follow up MRI in two weeks will give us a more clear and definitive answer.

The BIGGEST thing in all of these results is that all of these findings and comparisons are done on no treatment – pure leap of faith and trust in God. No treatment and nothing changed, and mostly improved suggesting benign conditions!!So now what. He gets fired up pretty bad about the US healthcare system and the way it works. A multi armed approach, even for immunotherapy, needs to be attacked from more than one angle as biology is highly adaptive even in tumors, as we all know. In other words, just doing IL-2, or just doing any of these wonder immunotherapy treatments as a singular entity, isn’t the best option. It still MIGHT work that way, but we get so frustrated because of the red tape on trying to get the exact protocol for our specific disease. He said it best when he spoke about the fact it would be so nice if it was just a fight against nature, but it isn’t. I’m not getting political. It’s a fact with the US healthcare system straight from all of my physicians, but there are many, many good scientific reasons for why some things are done the way they are. However, I get very angry and frustrated, as do other patients in my cohort as well as physicians, when we as a group want to try a regimen that everything points to it being worth a try. In other words, an experimental combination for such a small cohort should be allowed, but it is not for many reasons, and expense is one of them.For instance, he has an angiosarcoma patient (he talks about in the consult) who is doing a self-defined treatment in India – one that Ravi designed as he was asked by this patient and family – if you could design a protocol, what would it be without any restrictions. He went over it, and it’s what they are doing there because it would be impossible to do here. Unfortunately for us, this family is very well off financially and unless I won the lottery last night, is out of the question for me. So, where do we go from here? We just try to get into a trial of some sort even if it means as a single drug entity. Preferably, we want to do PD-1 trial. However, those are hard to get into for angiosarcoma. Next, most likely, IL-2 but it’s going to be very hard to get insurance to pay and it is a VERY expensive therapy – one of the worst.

With that said, Dr. Ravi wants me to meet with his boss, Dr. Hwu, who is one of the best immunologists in the world, and is the chief of the melanoma and sarcoma divisions. He is kind of a big deal. When Dr. Ravi is nervous about emailing him, you know he’s someone important! Dr. Ravi is also going to chat with Dr. Tap to see if we can get him onboard for IL-2. The more letters for insurance, the better!This is it in a nutshell, and we will pursue Dr. Tap’s PD-1 clinical trial for now, but I won’t get my hopes up for that one. We will than pursue IL-2, but I won’t get overly excited about that either unless insurance pays for it.Any and all comments, suggestions, networks/connections with people, bank accounts/lottery tickets are all welcome! Oh to be rich…..

Thank you for fighting with me. I am beyond exhausted and emotionally drained. I have a lot of fight left, and we are going to need every ounce of it. Thank you for trusting in the power of prayer. Thank you for loving us unconditionally and for being the most patient network of people I have ever known. You are all remarkable, and for that, I am forever grateful. I love each and every one of you so very much, from the depths of my soul and every fiber of my heart.

You define the word commitment. Your lives are the very epitome of strength, love, caring, and family. You are my rock, and as I always say, family is my cure. From my wife to my boys, and through all of you, God has given me another day to fight, advocate, love, learn, laugh, and live. Time is precious. Let’s keep showing this world through every single action we do and word we speak how wonderful it is to be alive today, this very day. We will always have each other.

I love you.

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Short Interval PET Scans

2:00 p.m. (approx)
We have arrived. It’s warm and humid here. Not sure I like that too much! And before you cold weather haters say a word, I have UNO lung! High humidity and heat are no good for breathing! You were all about to yell at me…..discriminating against singular lung people! 

Mine is a PET/CT scan with contrast. With that said, I have my wonderful contrast drink to consume, then radiotracer injection, and then the scan at approximately 430pm.

Love all of the texts, phone calls, and messages from all of you, and most importantly, the prayers. I am a blessed man, a truly blessed man to have such amazing people in my life.

No need to stalk Andrea and I much tonight. You all have the night off. Except for praying. Please pray for me to be unremarkable (never thought I would say that!) There won’t be any news until at least 11am tomorrow morning.

We love you, so much, for helping us carry this weight. We love you for your kind words and passion for life. We love you for taking care of your own lives in such a way that people can see what a wonderful world we live in. We love you for being with us through almost 5 years of fighting cancer all the while understanding that life still needs to be lived – some times it is hard, but it is always worth pushing through the pain, tears, and heartache to live another day with the life God has blessed me with.

We love you for being you. Thank you for being an extension of my amazing family.

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9:00 a.m. (approx)
On the plane to Houston. Nothing more enjoyable, besides being cancer free, than to turn on my phone when landing and getting a plethora of texts, voicemails, emails, and messages. I love you all. I truly do. I share our story and journey for many reasons, but having you share your lives right back is close to the top of the list!

And I’m so hungry! I’m going all out for this test. They say fast for at least 6 hours – I’m fasting for 12 (you want the cells to be hungry for the glucose radiotracer). They wanted me on a high protein diet. Water and protein powder twice yesterday, and once today. Lots of chicken and no carbs. We are going to seek out and destroy these little critters (if they are there, of course!)

Please continue to pray for God’s healing hand and mercy.

We love you all so very much. Have an amazing day!

PET scan prep is at 130pm;
PET injection is at 3pm;
PET scan itself is at 4pm.

Consult with Dr. Ravi is tomorrow (Thursday) at 1030am.
All times are Central. Thank you for coming before God with us. 

Thank you for being you, and thank you for making my world, our world, an amazing place to live. We are all in this together, and no problem is too big or small as long as we can stick together. Always remember that.

Posted in Treatment Progress | 2 Comments

Defining Life Moment

Defining Life Moment = sitting comfortably next to my beautiful bride being 30 feet away from one of the greatest performers, George Strait. For a moment, I snuck a glance at my amazing wife to see her eyes wide with the glisten of tears within them. It was a pure, raw, and selfless moment. I felt it too and couldn’t help but tear up myself. It was overwhelming.

George Strait’s career and life are inspirational. His songs tell a story and a life full of blessings that transcend generations. He’s more than just a person that the masses flock to in order to see perform. His performances are simple, but they are real. Just him, his guitar, and his band. No flashy lights; no grand performance of smoke and lasers. Just him, and what seems like only us. It allows you to relax and just be in the moment. It’s what we so desperately needed, Andrea and I. Thank you Mr. Strait. I hope to one day meet you, and thank you in person.

Furthermore, being where my wife and I are today, with all that we have been through, it is a miracle, a blessing, and something to be so very thankful to God for. For now, my life has been spared. Yes, we are fighting the disease once again, but I have plenty of fight left. The journey ahead is still very uncertain, but living in the moment is one of the greatest gifts of all. I love my life. I really do.

Dear Cancer,

My sincerest apologies, but you are going to have to step aside. I have a life to live, children to raise, and a wife to fall in love with all over again each and every day.

Sincerely,

Ryan, husband to a beautiful wife and father to two amazing boys, friend/family to an ever growing group of angelic people, and a child of God.

Thank you from the bottom of our hearts, Mary Leja (Jodi Ralston), for the amazing tickets. It was a perfect life moment for us, and one we so desperately needed. We can never thank you enough.

I love you all. Please pray for unremarkable scans this coming Wednesday. Please pray for peace and comfort. Please pray for healing and guidance. I will pray the same for all of you. Have an amazing rest of the weekend.

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1523076_10202428365103107_1725117780_oAll done! The procedure itself is complete. It only took 17 minutes, and of course, I listened to Jim Brickman while getting the procedure – put me to sleep.

More good news, the lesion did not grow in size AND there were no other remarkable findings. Thank you to God! I am so happy about that news. Now we play the waiting game to see if it worked. We also have our repeat PET scan in two weeks. What a stressful month!! If January was bad, February is awful with anxiety. Please continue to pray.

Since we were rained out yesterday, we will be going to the zoo today. Hopefully, it doesn’t tire me out too bad.

Thank you for all of your prayers and love. You are all amazing in this fight, and you make this all worth it. I love you all.

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Gamma Knife Procedure

894945_10202426753062807_1721904118_oFor those who are unfamiliar with the procedure. The entire process could take 6-8 hours.

First, I get fitted for a halo device. The neurosurgeon numbs 4 areas (two on forehead and two in the back) for placement of pins. These pins are attached to the halo and keep it in place. Think of steel resting on concrete. They don’t drill in so they twist it tight. They take the MRI with this device on. All measurements are taken from this device and the images by the radiology oncologist, neurosurgeon and physicist.

After the MRI, I am still wearing the halo while Andrea and I get something to eat. The halo is worn during the entire procedure to keep my head absolutely still.

During this time, the medical team measures and determines the plan. They are also looking for changes to the current known spot, and God forbid, any new spots. I don’t think I can handle any more changes right now.

Once a plan is in place for my particular case, I go in to the gamma knife procedure. The order of patients is unknown and can change. Your guess is as good as ours. I’ll keep updating along this thread when we know more.

The procedure itself, if we are going off the last MRI, should only take about 30 minutes. There are, I believe, 128 individual radiation beams. The singular beams are not what causes the treatment which is why they can focus both deep and superficial without harming tissue “on the way” to the tumor. It’s the spot where all beams intersect that all the energy is used to utilize gamma knife. As you can imagine, changing angles and such of each beam can precisely move this focal point of radiation. Hence, the reason for a physicist to go over all calculations.

After the procedure, I remain in the room for an hour. Once the hour has passed, we have to stay in Houston for 24hrs which is why we are not leaving until Tomorrow.

As far as the procedure, it’s new so of course I am nervous, but it’s what is the down the road I am more nervous about. Since it’s already there, where else is this horrible disease? It’s a horrible mind game.

Also, it’s not a surgery as we are all familiar with. We will not know the efficacy of this treatment for at least a month. I come back in March for a repeat MRI to see, of course, that treatment worked beautifully!

For now, we just watch out for signs of complications of inflammation or bleed outs – worst headache ever, dizziness, nausea, infection and emesis.

As I was finishing this note, they took me back and fit me for my halo. I included a picture! Now we wait for the MRI.

Actually, none of this medical stuff is true. They are auditioning me for the next Iron Man.

Please pray. We love you all.

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En Route to Houston

Here we go. Chicago tonight. Houston in the morning. Let’s get this over with, and figure out what we are up against.

The hardest part this evening and about this current trip is how absolutely excited Landon and Logan are to ride on an airplane and to go Houston. Why cant this be a vacation? It breaks my heart to think about the real reason, but at the same time, their smiles and laughter truly are contagious. I am so glad my beautiful bride and amazing children are coming with me. And very happy our “nanny” Grandma Moore is coming too.

Please pray for many different things. Please pray the brain lesion hasn’t grown (it would be a miracle if it was gone). Pray for comfort and peace of mind. Please pray the MRI doesn’t turn up anything new. Please pray the short interval PET scan in a few weeks shows nothing remarkable. Please pray for God’s love, mercy and healing hand.

Life doesn’t stop so I shall not stop living it. Going to the zoo tomorrow in between blood draw and IV placement.

We love you all, so very much.

Posted in Treatment Progress | 4 Comments

Update and Surgery Scheduled

Good evening to all you beautiful people! A few things, and then I will disappear into the night.

First and foremost, thank you for your steadfast messages, notes, emails, texts and phone calls. I do not have the energy, yet, to respond to all, but I promise you I read them instantly and smile wholeheartedly. You are amazing, and please don’t stop. If you wish to text or email me anything at all, please don’t hesitate – 517 242 8146 and r0humph1@gmail.com. It’s never a bother, and always needed and necessary. One thing I have learned is to never hold back, express what you are feeling, and have no regrets.

As for us, we are doing okay. I am asymptomatic, and that is what we are riding on right now. It’s all internal, and not producing any outward signs – yet.

I had my first of what I can only assume many break downs and emotional outbursts today. I drove to a parking lot to be by myself and cried uncontrollably at life for a little over an hour; at all things about my future; about my sons; and about my beautiful wife. For the time being, I’ll spare you my various, wide reaching thoughts and fears. I’m sure you can imagine what they are.

Stereotactic radiosurgery (gamma knife) has been scheduled for February 5 at MD Anderson in Houston. We have to be there on February 4 and stay for 24 hours after surgery which brings us to February 6.

I have an amazing group to call my personal medical team. They are far reaching, and I am very blessed and humbled by what they do for me. I’m not sure why or how, but I am forever grateful to God for each and every one of them.

My doctors, Dr Ravi and Dr Tap, both called me on their way home tonight and seem cautiously optimistic about treatment of my brain lesion. They are both confused as to why it happened in the brain, but it seems we caught it very early.

One step at a time, and we’ve been here before. Focus on the now, form a plan, execute the plan, and no looking back – no regrets.

As for Cycle for Survival, the surgical pre- and post-op paperwork says I can resume normal activity 48 hours after surgery – it’s a good thing Cycle is 3 days after! I have my priorities straight.

Thank you for supporting our team, and please continue to spread the word and donate.

It’s been a very long, emotional, and exhausting 3 weeks, but you carried us through. Strong willed and with immense courage, we march forward again into the unknown to beat the odds for the third time.

Thank you to God for giving me, yet again, another chance to fight. Thank you for pushing me to get a random scan. Thank you for a plan and for protecting my family and me. Thank you for the support group of epic proportions that you have brought to our journey and to our battlefield.

I love you all. Have an amazing evening, and hold those you entrust your lives with and who you love more than life itself extra tightly for us.

Posted in Treatment Progress | 2 Comments

More Good News than Bad

Long day! At the airport and time to go home. I get to go home to two cute little boys soon, and my beautiful wife!

We ended up not only seeing a neurosurgeon but a radiation oncologist as well. They were surprised how fast we got down there this morning, and the radiation oncologist wasn’t sure how we ended up with both appointments in one day. They just haven’t met me before!

Between appointments, I was on the phone with my insurance making sure all the preauthorizations were sent. I had to make a few phone calls to get my clinical reports “changed” to reflect urgency in these consults for insurance sake. It’s a process, but it’s becoming a well oiled machine.

Thanks to all of you in my life, it definitely helps having people by my side. The news was mixed but more good than bad as far as my case goes.

Honestly, I can only thank God for pushing me to get that MRI. I have no other way of describing it. There was no reason to get one. I am asymptomatic. I just felt I needed to get the scan done. It turns out to be the best thing possible, all things considered.

The location the tumor is in, it could have grown to 3-4 cm before symptoms would ever service. With a blessing in disguise notion, we are very lucky to have noticed it this soon.

The bad news is they are 99% certain it is metastatic disease. The good news is it is very treatable for now. The tumor is small and in a great location (superficial and within the right front lobe).

There are 3 options, but multiple combinations. First, we can do a craniotomy to remove the tumor. Second, craniotomy followed by whole brain radiation. Third, craniotomy followed by cyber knife. Fourth, cyber knife alone. Fifth, cyber knife followed by whole brain radiation. Sixth, cyber knife followed by craniotomy (if cyberknife didn’t work or severe tumor necrosis) followed by whole brain radiation.

So, the break down: whole brain radiation is just that. They radiate the entire brain in hopes of not only getting the primary site that is visible but the other sleeper sites as well. Unfortunately, once you do whole brain radiation, you cannot do it again. It does not make sense to do this path right now. It’s something that we need to keep in our back pockets.

Craniotomy is brain surgery. They cut through your skull, lift the dura mater and excise the tumor. They can radiate the area afterwords.

Gamma knife is very precise radiation, and it really is what the name implies. Gamma rays are projected in such a way to in actuality cut like a very precise knife – without open brain surgery. The efficacy and outcome of both, for my case, is very comparable.

All the physicians seem overly optimistic about the situation, and are eager to get this done. As I share in their sentiments, you always have to keep in mind their statistics are based on multiple cases of varying cancers across the board. You have to understand angiosarcoma to understand our precautions and careful questions and concerns. It’s metastatic nature and poor outcome are very important – not to scare people away but to enforce questions that are very important and questions we utilized for this disease specifically. It is very important to understand where the numbers physicians throw out come from, and it is very important to know your specific disease as much as possible.

First, with surgery, how is the bleeding controlled, as a single cell or bleed out could mean disaster for disease? I do not believe it is coincidental that my recurrence in my hilar node was at the exact location of my surgical clips from my wedge resection.

Second, margins are VERY tight in the brain, if any at all. However, we made a point and she agreed that we should look at whatever margins are possible with gamma knife. She would talk it over with Dr. Lang and the physicist on the day of the procedure.

I also mentioned that upon my review of the scans at home that there is a feeder blood vessel coming from the superior aspect of the tumor. With the nature of AS, would it be possible or worthwhile to gamma knife this as well? She thought that was a good idea and would discuss it.

It started out with three options, but you can see we narrowed it down to two. Whole brain radiation can wait for another day, or never. 

With the outcomes about the same, it only makes sense to use gamma knife right now. The technology is quite amazing, and you really cannot avoid the “cool” factor amidst all of this news. You tend to remove yourself from the situation, and look at it from an outsider’s point of view. Science is amazing.

Since everything moved so quickly and efficiently, we are waiting for Dr. Lang (neurosurgeon) to coordinate with Dr. Li (radiation oncologist) to set up a date. Gamma knife is a boat load of radiation to a very precise spot.

It’s one reason we use it against AS since traditional radiation (whole brain, IMRT, etc.) is low doses over a long period of time. AS is very radiation resistant. Instead, you pack a very powerful punch to the tumor itself in a single day – in fact, with the size and location of mine, the procedure should only take about 20 minutes.

Now, there are a lot of little things to take into account – tumor bleed outs, AS recurrence, recovery, additional systemic treatment, surgery as well, tumor necrosis, future scans, etc. However, for now, this is the gist of the consults today.

They should get back to me shortly, but we are probably looking at doing this procedure next week or the following week.

Thank you for your very loving and heartwarming messages, both private and public. I assure you I read them all, and will attempt to reply as the days go by.

Tomorrow isn’t promised, but it is something we can dream about. Don’t lose sight of your dreams and your goals, but make sure you share them. Make sure you allow others to experience your life right along with you.

What I truly appreciate is that you don’t make this about me; you don’t make it about my journey. Instead, you tell me about you, your life, and what matters to you. You understand the true value of life and friendship no matter the day or situation. You know that by sharing you, and me sharing me, our lives are both forever enriched and forever changed for the better. I learn just as much from you as I hope you might learn from me.

We have one chance, and things aren’t always going to be easy. It doesn’t matter. We still have one chance to live, and you must choose to live with a passion and love that can transcend for many generations. You must establish within yourselves an unwavering love and commitment to live your life the way it was meant to be. You have shown me each and every single day how to do this with a smile and a simple hug. You all have it in you. Thank you for being you.

I love you all, so very much.

Posted in Treatment Progress | 2 Comments

I’m hurting. I’m torn. I’m numb.

My lovely wife said it best today, this is the nightmare that you can never seem to wake up from. If I am being honest, I do not know if I can do this again right now. How much should I have to endure to survive? How much torture should my wife have to be put through if the end result is a slow death? I am so exhausted, so emotionally torn, so sad, so scared, and so heartbroken that to even consider the tasks ahead are too much to take on right now.

For the first time the other week, I thought for sure I would make it to Landon’s first day of preschool. I had vivid dreams of standing there taking one of those pictures you see on Facebook where parents are crouching next to their adorable child while they wear their cute little backpack. It hurts. It hurts deep. I have no other way of describing it right now. I’m hurting. I’m torn. I’m numb.

I spoke with Dr. Ravi this evening. He stated it’s a very high probability that this is AS in my brain. He stated it is how it usually presents itself. He did state that he is very happy with the size and location, and shouldn’t be an issue with removal. I told I him I didn’t share in his sentiments of happiness.

Flying down to MD Anderson tomorrow morning to hopefully fit in a consult with a neurosurgeon, Dr. Lang. I feel like I haven’t seen or spent any quality time with my beautiful wife and sons in years. This just keeps dragging on and on.

I know this isn’t really Facebook material, and I should have wrote this in my blog. I’m not going to tag anybody because it is not my intention to shove it in people’s lives. Writing is cathartic for me, and it helps me get this out of the way so I can fight with all that I have without getting mixed up with what ifs and why me. Maybe this will just slide down news feeds and not even be noticed. I’m just glad I got this off my chest right now – always better out than held in. For good or bad, we are in this together, and I know no matter what, you will take care of Andrea, Landon, and Logan for me.

Please pray for us. I love you.

Posted in Treatment Progress | 6 Comments