Great Skin – Great Cause

emmyMeet our friend Emmylynn Castillon.

Emmy is a high school friend of Ryan’s, and an Independent Consultant for Rodan + Fields skincare products. Emmy has offered to to give 50% of her earnings from Rodan + Fields directly to Ryan!

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Anyone who signs up as a PC Perks Member, 100% of her earnings from those PC Perks orders will go to Ryan, PLUS receive:

  • PC_Perks_logoInsider information, special pricing, superior service.
  • 10% off* all Rodan + Fields products, all the time.
  • Free shipping on regularly scheduled orders,**
  • Enhanced Customer Service, exclusive PC Perks hotline a quarterly e-newsletter especially for you.
  • Exclusive Preferred Customer promotions.

Rodan + Fields offers everyone clinically proven products, expert support with the RF Connection, and cutting-edge skincare information. And with our exclusive PC Perks program, enhanced benefits and even greater value are just a few clicks away.

Activate all these perks and the convenience of timely automatic delivery of your favorite Rodan + Fields products with a one-time enrollment fee of $19.95 (waived by Emmy) and your first purchase of $80.00 or more. Read details.

WIN $100 IN FREE PRODUCT
Each person who places an order between now and December 1st will have a chance to win a $100 Gift Certificate to put towards a future Rodan + Fields purchase!

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ECastillonRF@gmail.com
Instagram: ECastillonRF
Facebook: Facebook.com/ECastillonRF

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Raise for Ryan – How to Help

To say Ryan and his family is an inspiration, is an understatement at it’s fullest. Aside from the fact that through all of his diagnosis and treatments in the past 5 years he has kept a positive attitude, he also is a loyal, honest and respectful friend. In some of my lowest and depressing times, he always seemed to know when to reach out and just say “smile” or send me a photo on Facebook book that would make me laugh.

And so his fight continues. As does his concern for the future of his wife and two sons, should the day come that they must continue without him. Not only has Ryan been on a Leave of Absence from American Airlines, making it a one-income family, but he also got the dreaded word in September that he no longer will receive his flight benefits – adding to the already high cost of travel to his doctors in Houston and New York City.

As if the day-to-day cost of living and traveling doesn’t weigh on them enough, Ryan does not have life insurance. Four months before his initial diagnosis in 2009, he canceled his life insurance with his company in the belief he was covered under his wife’s. He did not do his due diligence and has had to live with it everyday. Needless to say he is now un-insurable without paying a hefty price.

I am just one of many that will be raising money for Ryan and Andrea. It is not a short term need either, it is ongoing. I made a promise to Ryan that I would help raise as much money as possible, with the goal being to pay off their mortgage, vehicles and student loans. His biggest fear is that his medical bills and travel expenses will bankrupt their family, and he refuses to do that.

If you have any questions, please feel free to contact me. Melissa Chinn (605) 310-7563 – text preferred, email me at m.chinn@cureasc.org or send me a Facebook message.


Donate through Paypal: 
You do not need a Paypal account to utilize this route


Mail check or money order to:
Make payable to:  Ryan Humphrey Donation Trust, Acct# 3750 1133 9071

Ryan and Andrea Humphrey                                           Bank of America
PO Box 453                                               OR                     820 Charlevoix Dr., Suite 280
Grand Ledge, MI 48837                                                   Grand Ledge MI 48837

Deposit at any local Bank of America
Ryan Humphrey Donation Trust
Account Number: 3750 1133 9071

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The PayPal donation and goFundMe donation both are a fee-based service. The fee varies from 3-9%. The only way to make a non-fee donation is to mail a check directly to Ryan or make a deposit directly to their Bank of America account. If you have specific questions, please feel free to contact me. Thank you so much for your support.

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From Left Field…….

­­­Good morning everyone. I hope you are all having an amazing week, and that you continuously can find something to smile about.  This life is a wild ride, and we never know when we will get a break and a chance to catch up with what is going on so make the best of it.  As for us, there is no breather in sight yet but for reasons somewhat unforeseen.

First and foremost, the most exciting aspect of this week’s trials and tribulations is that the PET/CT came back as clear.

If you want to read the official PET report:  October 14, 2014 PET

This is very exciting news, but one that was very short-lived – if you can say it was celebrated at all.  Please do not confuse any of this with us not being grateful and blessed for this amazing result, but had you noticed I did not use the term NED, it is because we were hit from left field. When that happens, I first shut down.  I sulk for a bit.  I confer with those closest about what to do, and we go into scheduling and planning.  We are still in scheduling and planning mode.

With that said, the day of the scan went very smoothly. Rather, the morning went as smoothly as I anticipated.  I had a very nice conversation with the technician who is fighting her own demon of ovarian cancer.  After so many scans and so many years, we all start to become a big family and openly share our lives.  Following a very routine scan, I had a nice, long conversation with a nurse turned amazing family friend about life, kids, etc.  I was taking my time because I didn’t have much to do since I couldn’t be around my children until later that evening due to the radioactive nature of my PET injection, its half-life, and the rapidly reproducing and growing nature of my children’s normal cells.  I felt good.  I felt as if there was a shimmer of light, and things might calm down for a bit.

I was wrong.

The very moment I sat in the car of the parking garage, I received a phone call from Houston. It was the generic number for them, but it was a call I was expecting.  However, the news I was not.  I had no reason to expect it.  The MRI was a done deal, or so it seemed.  The week prior the one physician we could not meet with was our neurosurgeon, Dr. Lang.  He was out of the country for the week so we would have to wait for his interpretation of the scan.  I emailed his team at the beginning of this week for any sort of update, and this was the call I was expecting.  We had no reason to believe anything would change as the report was read as just watch the large lesion.  Our radiation oncologist, Dr. Li, was not overly concerned about it.  Lastly, Dr. Ravi voiced no panic over the lesion in question.

However, Dr. Lang disagreed wholeheartedly with all parties involved.  His nurse, Cheryl, was the one I spoke with and whom delivered this news.  He strongly believes the large lesion progressed and wants to operate on it soon.  They wanted to schedule the surgery right then and there, as I was just getting out of my PET scan sitting in my car.  I still had no idea about the PET report, but here I am about to schedule open brain surgery.  What.  Just.  Happened?!

I told her I would call her back later as I had many emails, texts, and phone calls to make.

I called my Houston oncologist, Dr. Ravi.  He didn’t answer, but responded with a text a few minutes later wondering what was wrong and said he was in Germany.  I informed him of the day that turned drastically south, and he sent out an email for Dr. Lang to contact him.  I am unsure if they ever spoke, but receiving a text from Dr. Ravi that says “Don’t start the temodar.  Go to surgery” says enough for me.

In summary, the PET report was clear, but I will now be having open brain surgery in just 2.5 weeks down in Houston.  I have a consult with Dr. Lang and anesthesia as well as a mapping MRI on November 3, and the surgery is scheduled for November 4. I am planning on being down there, recovering, for most likely 10 days to be on the safe side. I know there are a lot of questions.  I have a lot as well, but they will hopefully be answered as time moves forward.  In the meantime, we have to scramble to get things taken care of and have all our affairs in order.  I no longer have my flight benefits with my airline so our medical costs just went drastically up.

After 5+ years, not a single thing in regards to my case is getting easier. We are actually traveling more now.  As a side note on all of this, we need help, and it takes a tremendous amount for me to admit this.  Some amazing friends are getting things underway for us.  If you have any inclination to help or have any ideas of your own, I put down my pride and humbly ask for any assistance.  I will not bankrupt my family.  I just cannot do that to them, and we need to get ahead of this before it’s too late. As for me, I have surprisingly not shed a tear over this yet.  Denial?  Possibly.  Honestly, I think it’s just shell shock right now.  Ask me how I’m doing on November 3 – the night before surgery.  I may paint a different picture.  I just want my family taken care of.  It’s all I ever want.  It’s all I really ever need to get by on this journey, but it is taking a toll on our family as of late.  Please pray for peace, understanding, and continued faith.

This news is shocking and disheartening to say the least, but it doesn’t take away my “every day”. What do I mean by this?  I can still walk. I can still take care of myself and help my wife raise our boys.  I can still take Landon to preschool every day, and watch him learn and grow.  I still have my precious one-on-one moments with Logan while Landon is at school.  I can still exercise, and I feel great physically.  It is not going to take me without a fight!  Or should I say war since it’s been so long of a battle?  Either way, I still have a strong will to live.

We are blessed beyond all measures in the grand scheme of things. After the shock, this surgery itself is a blessing.  Not all brain tumors are operable.  Not all brain tumors are in a relatively “safe” location as mine is.  It is still a very serious surgery, and it most certainly doesn’t come without severe risks.  However, it’s the course we are plotting, and we will do it together. One day at a time, and thankfully, we are not in this alone.  Not by a long shot.

We thank you for your patience in all of this.  We will update you as things unfold.  If you have any questions, or any ideas on how to help, please let me know.

We love you all so very much.

Posted in Family, Fundraising, Treatment Progress | 11 Comments

Thank You For Your Continued Prayers…..

Good morning, and a very happy Friday to all of you beautiful people. Once again, thank you for all of your love and prayers each and every day. It is my honest and humble opinion that your unwavering support is what gets us our miracles and allows us to fight each and every day. We truly love you all.

First, I hope it is well known by now that no matter the news, good, bad, or indifferent, I/we will share it with the utmost honesty and as quickly as possible. I mention this only because it may take us a day or so to update everybody due to additional appointments, scrambling to get from one place to another, and most importantly, sheer exhaustion. I mention this disclaimer provoked only by my own conscious because I regret not updating everyone as soon as possible.

As for my results, they were very good. God has blessed us and continues to bless us with miracles on His own time. I’ll explain what this means in a minute. For those that are curious, my official MRI report can be found here:

October 8, 2014 MRI – MD Anderson Interpretation

When praying, hoping, and dedicating moments to God and ultimate healing miracles, it is sometimes hard and complicated to see what exactly has been answered. Sometimes it may miss our sights; other times it takes a while to see. While we always hope and pray for remission, cure, squeaky clean scans, and the like, the reality is these scenarios rarely happen on such short notice, especially against an aggressive and multifocal disease such as angiosarcoma. It is sometimes hard to align our idea of a miracle with God’s actual miracle. Acceptance in the unknown, faith in God and prayer are essential parts of this equation.

For those who didn’t jump on the MRI report above and continued to read my rambling prior to any updates, there were no new spots discovered. Furthermore, there was no increase (or significant increase) in the large treated lesion in the medial frontal lobe. As for the previously treated smaller 2 lesions, they remain stable or decreased slightly in size. Not only are these findings important on the efficacy of GammaKnife (nothing was considered progression of disease), they are crucial in the continuance of my current chemo regimen of Taxol. Had there been any progression (new lesion or blatant growth of a previous lesion), all bets are off with Taxol, and we would have had to scramble for a new therapy. However, this is not the case!

As we would truly have hoped for a decrease in size of the larger lesion, it is not necessarily a sign of anything bad as of yet. We have to get through 1 or 2 more monthly MRIs to consider surgical intervention on this lesion. Although the size is about the same if not slightly larger, the way it contrasts is different indicating possibly a good response to GammaKnife. Due to the initial size prior to treatment, it can be expected to fluctuate in size for a period of time due to edema and inflammation. Without physically going in via a surgical approach, we will never truly know the state of any lesion. We rely on scan comparisons to determine the state of disease. With that said, all of our consults went very well in the aspect that all the physicians feel this is a step in the right direction (we have yet to speak with the neurosurgery team as Dr. Lang is out of the country).

As of now, we will have to continue close monitoring of the brain. The concerning aspects (and why this isn’t a grand slam follow up) is the increase in edema (swelling) surrounding the large lesion and the hemorrhagic component (active bleeding) within the large lesion, both of which can cause problems if they don’t subside and retreat soon. These could be signs of treatment response or signs of treatment failure. Time will tell, but our medical team feels confident that treatment is working.

Going forward, this follow-up undoubtedly indicates we can continue on weekly chemo treatment of taxol. In addition. we had mentioned a month or so ago the possibility of adding Temodar thus creating our own single case study of the combination of taxol/temodar. This drug has been approved by my insurance, and Dr. Ravi thinks it is a great idea to add. We will be adding this drug starting Monday night.

The importance of temodar is it’s ability to cross the blood-brain barrier in significant quantities. This barrier is somewhat of a protective fortress for your brain. It is quite an impressive feat of biology, but in my case, it has been comprised. My disease has penetrated and taken up residence in my brain. In some circles, it is felt that once comprised, chemo drugs may have an easier time getting through that would not have otherwise been significant across the barrier. I’m not entirely convinced of this fact, and it is the sole reason for me pushing for the addition of Temodar.

Systemically, taxol is quite effective against angiosarcoma. Within the central nervous system, the efficacy is drastically reduced due to its inability to enter in any appreciable amounts. In essence now, we are using a drug that has great systemic response (taxol), and one that has a great response across the blood-brain barrier (temodar). The only caveat is the literature doesn’t have anything of significant value in the response and efficacy of angiosarcoma and temodar, let alone the combination of taxol and temodar that hasn’t been tried yet. As long as we can keep this disease at bay, we are doing well. I can live, literally and figuratively, with fighting a chronic disease.

We can breathe a short sigh of relief as hurdle 1 of 2 has been surpassed. Unfortunately, the stress will soon mount again as I have my follow-up PET/CT scan this upcoming Tuesday (Oct 14) at 745am to determine the status of disease throughout the rest of my body. For refresher, my last PET/CT scan showed NED everywhere else besides my brain. Please pray for peace, comfort, and a clear scan on Tuesday. Please pray for efficacy and minimal side effects from adding temodar next week. Please pray for strength and determination to continue this fight. Please pray for Andrea, Landon and Logan that this fight

Life is what you make it so don’t waste a minute sulking. Cry when you need to. Scream when you must. Just don’t forget to smile. Don’t forget to search for that which is good in this life because we only have one shot at doing it right amidst the mountains and valleys in our way. And this one shot is short and delicate. It isn’t always easy, and it certainly isn’t always fun, but it is always worth it. As you constantly and without hesitation always show my family and me, please know you are never alone in life. We are all here for each other.

We love you. Very much.

Posted in Uncategorized | 4 Comments

Mason Jar Fundraiser

mason_jarIf you have free time next Saturday (9/27), please drop in for one of two (or both) charity yoga classes (11am and 1230pm).

I have been doing a poor job in helping them spread the word with all the news and happenings as of late, but please know we appreciate this opportunity to help our family more then you will ever know!

The Mason Jar fundraiser is to raise donations for my family to help offset the ever mounting costs of this ridiculous and expensive cancer journey. There are 1, 2, and/or 3 ways you can help if you have time.

1.) Mason Jar – please consider placing a mason jar in your local business, other businesses around town, etc. to collect for this fundraiser. The donations collected can be brought directly to The Dailey Method studio in Birmingham or mailed to the studio (The Dailey Method, 34665 Woodward Ave, Birmingham, MI, 48009).

2.) The week leading up to the charity classes (9/21 – 9/27), the Dailey Method studio in Birmingham will donate any drop-in class ($20) or news tudent 3-pack ($45) purchased to our family.

3.) Lastly, please consider attending one of the two charity classes on Saturday, September 27 (11am and/or 1230pm). I will personally attend and be participating at both, and I would love to see you all and thank you in person!! It is by far the single most important exercise routine I continue to do. It is literally a life saver for me on this journey!

If you have any questions at all, please do not hesitate to contact Carly, Candace or myself. At the very least, please help me spread the word.

I love you all very much!

Posted in Fundraising | 1 Comment

First month follow-up of GammaKnife

10492184_10203955068469737_1468477933802857075_nWe were able to catch a 440pm flight out of Houston to Dallas leaving MD Anderson at 3pm. We were very rushed! We are now settled in on our flight to Detroit, and we will be home much sooner then we anticipated. I cannot wait to see Andrea and the boys – with them, life just makes sense no matter what is thrown at us.

As for me, it’s always a mixed bag of news. First and foremost, there are no new visible lesions. Obviously, this is amazing news! We thank God with everything that we have that nothing new has shown up. Please continue to keep that a constant prayer. It’s hard enough fighting this intruder without more issues arising!

As for the previous GammaKnife treatment, there were two lesions that were irradiated with gamma – both in the frontal lobe – smaller one more posterior on the right side of the brain near the motor strip and the larger one more medial.

The smaller one has decreased in size slightly which is indicative of an appreciative response to treatment. The larger one, unfortunately, has increased in size. However, this can mean many different things, and it was somewhat expected as this lesion was actively bleeding prior to radiation and treatment can and does cause subsequent swelling/inflammation.

Put another way, it’s not necessarily tumor growth. The area surrounding the lesion has grown or increased in visibility on the scan, not necessarily the tumor/disease itself. With the contrasting techniques on the MRI, our medical team is more convinced it is bleeding and swelling from treatment then progression of disease.

Unfortunately, as with everything in my case, only time will tell. Our plan for now is to watch it closely. Surgical removal of this area of concern is a real possibility, but it was deemed secondary to watching and waiting for now. According to our doctors, the first month follow-up of GammaKnife is very hard to judge the efficacy of radiation treatment. There are many variables in treating a site as the disease can swell from inflammation, internal bleeding, external bleeding, and/or disease progression. It’s very hard to tell at this point. Obviously, shrinking is the best scenario, but many cases have grown and then disappeared as time passed due to the biology and very nature of radiation treatment.

Chemo will continue, and we are still trying to get Temodar added to my chemo regimen with Taxol. We will plan to rescan with an MRI in about a month. Unfortunately, this will be the same time to rescan the entire body with a PET/CT scan. It will be one extremely stressful week come mid-October. Please pray for us, as you so selflessly continue to do.

Thank you for your love and dedication to my family. We could not do this without you – not for a single second. There is strength in numbers, and we are never alone in this world. You mean the world to my family and me, and I couldn’t do this without you all by my side.

I love you all.

Posted in Treatment Progress | 3 Comments

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 | 9 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.

Posted in Family | 5 Comments

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.

scans02-20
scans02-20-2

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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.

Posted in Family | 1 Comment