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!

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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.

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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.

scans02-20
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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

Time for Battle Mode

So this turned out to be a not so typical Monday!

Thank you for loving us so much. Thank you for reaching out and surrounding us with prayers, hope, courage, and love. Thank you for reaching out to my wife; I hope by now you realize Andrea and the boys are the air I breathe and my reason for living. Thank you for thinking of them over me as I have asked you to do. Thank you for texting me and messaging me knowing full well that is what I want. Thank you for understanding I am still me, and asking questions and sharing your sorrows and tribulations in life knowing no situation. It is never cumbersome or overbearing to hear from you. This I promise you.

After I collected my thoughts, I went into battle mode. This situation is not something I am willing to accept, and rightfully so. I called my case manager with my insurance company today, and informed her to expect some preauthorization requests to soon follow for consultations and possible surgeries/biopsies. They are on board and ready for them to be approved. Ironically, Dr. Tap called me to discuss what his doctors thought of the PET scan, and I laid the MRI findings on him.

Obviously, it is all concerning. The PET scan is not overly indicative of disease recurrence, but when weighing between waiting and doing a biopsy, he and his doctors are leaning towards biopsy. He is going to set up an appointment with an interventional radiologist (IR) to discuss biopsy options (sites, locations, risks, etc.). In light of the MRI, he is going to set up a consultation with a neurosurgeon at Sloan-Kettering.

As far as Dr. Ravi, I have not heard from him as of this posting, but I will contact him via phone tomorrow. In the meantime, my amazing cousin and her attending physician are working on getting me in with a wonderful neurosurgeon down at MD Anderson. Just when I thought my travel days were done for a few weeks, this all could change soon, hopefully!

As for me, of course I am scared. Who wouldn’t be? There has been a tremendous load placed upon me right now, and it is a lot to wade through. However, we will make it through. In order to defeat the odds, you must face the odds. That is exactly what we are going to do. Head strong and in full sprint, we will conquer what has been laid before us, again. You won’t allow anything else, and neither will I.

I realize the nature of a single posting with such upsetting news, so it is natural to think about what is happening in our household currently. These thoughts are also another reason I appreciate phone calls, texts, and emails so you can see what cancer cannot do. It cannot stop me from building a road for toy cars and building lego airplanes with my son. It cannot stop me from raising funds against cancer. It cannot stop me from reading Magic School Bus books or playing hid and go seek. It cannot stop me from chasing after two cute little boys. It cannot stop me from having a dance party with my wife and children. And it most definitely cannot stop me from loving my wife and children. All of which we did immediately after I posted about my MRI.

Life doesn’t stop, and it shouldn’t. It is nobody’s fault that this is happening. There is nobody to blame. There is nobody to get angry at. I don’t have time to figure out where to place all of these emotions. Instead, I funnel them all into a passion that is greater than me.

Nobody is remembered in their life for what they as an individual to further themselves. No. They are remembered for how they treat others, help others, and make a difference for the common good of us all. I don’t want to relish in the fact that the cards I was dealt aren’t the best hand to be given. I would rather take what is good and run with it. I would rather show that through good times and bad, you can enjoy what you have chosen to surround yourself with. We all have choices in life, and we build upon all of our decisions by learning, growing, and sharing. It is a blessing to be alive. Live it and love it.

Thank you for all that you do. I love you all so very much.

Posted in Treatment Progress | 2 Comments

Results of Brain Scan

Good morning and a very happy Monday! This is a good news / bad news status update.

The good news is our Cycle for Survival team is nearing 10,000 raised! YAY! To donate, please go to: http://mskcc.convio.net/site/TR?team_id=32244&fr_id=1970&pg=team

The bad news is the MRI of the brain came back worrisome for metastatic disease, not to put too fine a point on it. What was originally thought to be a routine scan of my brain (is there even such a thing as routine anymore??), turned out to be anything but. In any other situation minus this disease, the findings would have been most likely benign – most indicative of a cavernoma. As with the PET scan, there isn’t much we can do right now except wait. It’s awful and agonizing, but such is life at times.

What now? Yes, Dr. Ravi has already been emailed, and thanks to the wonderful electronic world, I do have the capability of giving him the entire study through DropBox, if he is comfortable. Furthermore, I have my own private neurosurgeon reviewing the films with her colleagues via the same DropBox route (isn’t technology amazing?!). Dr. Rapson is also going to speak with Dr. Ravi and one of her neurosurgeons, and get back with me today or tomorrow. Dr. Tap also has a copy on the way. With that said, the people who we trust with my case will have their opinions forthcoming. Just like anything, we go forward full steam ahead.

As always, if you need an explanation or have a question, this changes nothing. Knowledge is power. Please do not hesitate to write me.

For those so inclined, I have attached 8 different images of the area of concern, as well as the radiology report from the scan. I share these to educate and in the hopes of helping somebody else down the line, and to get any professional opinions. As with the PET scan, it’s an inconclusive finding, but my biggest fear, by BIGGEST fear is cerebral involvement and invasion. I pray this is of no concern, but for the time being, I need a break. The phrases “breaking point” and “approaching mental capacity” come to mind.

I will find the silver lining in all of this, but just not today. We need your prayers. I love you all!

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Posted in Treatment Progress | 1 Comment

From My Heart, To Yours

Good evening to all of you exceptional and amazing people in my life. You have all shown time and time again just how truly important it is to live your life, to share your lives, to care for each other and to make sure that no person is ever alone. It’s been a long and hard journey, and unfortunately, it is not going to get any easier. It’s hard to accept, but acceptance and moving on is what I have come quite accustomed to.

I have been asked how do I do this? How do we do this every single day? It often brings up the topic if this is the real me. I assure you it is. I do assure you, however, that I do have my bad days. You cannot avoid them, but I do not broadcast them as they are not what defines my situation. If you and I talk on one of those days, you will get an idea of what I am talking about. You also have to keep in mind it isn’t something to place upon the entire world. It is my intention through all of this not to convey that this is easy by any stretch of the imagination, but to allow you to understand that life does not end with a cancer diagnosis or any obstacle big or small. Life goes on.

Do I ever embellish? No and never. It is impossible to do so. Cancer is too honest of a disease in life. It teaches us about so many different facets of the emotional spectrum that you cannot possibly accept anything other than pure and honest emotions. I do not get angry at life, nor do I feel I was dealt a bad hand. I have learned so much about the human experience that I cannot possibly consider this anything other than a blessing in disguise. I have met some of the most amazing people; I have traveled the country learning new things, loving new people, and sharing my amazing family with all of you. Death does indeed scare me, but I cannot sit in those thoughts for very long. I have too much I want to accomplish, too many people I want to help and meet, and too many life lessons I want to teach my sons.

If I pass, I hope my life goes on through my wife, children, family and friends. It is my job to leave behind a life filled with as much happiness, love, caring and respect that teaches my sons and allows my family to live as if I were still here. These posts are meant to portray who I am, not what cancer can do to someone.

I have lost far too many friends to this disease, but I get comfort in knowing how their lives carry on through the very same people who are hurting so severely. Their strength carries them through. Their smile, memories, and love are always going to shine. This is what I want to happen. I want a story of inspiration and hope, not agony and pain. I want to be remembered for love, friendship, and advocacy, not bitterness, resentment, and anger. By doing it this way, it becomes more accepting for whatever course this journey takes because I know my sons will remember their dad in a positive light, and their mother, my wife, will have lived with me as long as possible with the notion that I am still me; happy, loving, caring, and full of life. And of course for all of you that you remember through me what it’s like to smile through danger and despair, to laugh through heartaches and tears, and to enjoy every aspect of the human experience, good or bad, in order to live a life that is as full and complete as humanly possible with whatever small amount of time we have here before Heaven calls us home.

As for my current situation, it’s complicated. It brings everything into play. In regards to the most recent scans, the findings are very inconclusive. If I were to have received a normal CT with contrast instead of a PET/CT, the impressions from the report would have almost undoubtedly declared me NED. It’s why we did the PET. Even still, the findings from the PET (low uptake in two clavicular nodes, thymic region, and inferior left pleura) are too small and seemingly insignificant to truly come to any conclusion. The only way to be of any certainty is to wait and see with the next scan. If the spots grow in size or increase in uptake, it’s cancer. If not, it’s not cancer. What a game to play, no?

For Dr. Tap of MSKCC, his impressions were there was nothing serious enough to scream cancer or that jumped out at him. His approach was to wait and see, rescan in 6 weeks with another PET scan. We did discuss waiting to see how his radiology department reeds the scan. With cancer, anything and everything is suspicious on a scan and rightfully so. Our approach, if it changes anything, is to have someone look specifically at an angiosarcoma case with all of my HPI (history of prior illness), and determine if more needs to be done right now. Dr. Tap is a very knowledgeable physician, and he errs on the side of conservatism with treatments of new and path-finding capabilities. Without data, he doesn’t see the reason for the risk. I agree with him on those regards, but angiosarcoma is anything but normal.

My thoughts before Dr. Ravi’s consult synopses are simple. Although SUVs (standard uptake values – value given to the level of uptake on a PET scan) are generally not worrisome below 5.0, my case has proven otherwise. My previous, now excised through pneumonectomy left hilar tumor had a max SUV of 4.3. At the time of surgery, it’s SUV was 2.8. To me, this becomes significant when viewing my current remarks on my most recent PET scan. The SUV of the two clavicular nodes were 1.7 and 2.8. The SUV of the thymic region was 3.8. Finally, the SUV of the pleural finding was 3.1. We cannot determine what is going on. It most certainly could be post operative inflammatory changes, or it could be disease. What we do know is the likelihood of there being a recurrence now or later is very, very high. It just is, and that is a fact for my case. This leads into Dr. Ravi.

Dr. Ravi’s approach is always and will always be of the path-finder type for me and for all angiosarcoma patients. He has dedicated his work to treating and curing angiosarcoma. All of our current regimens against this disease are by the book and somewhat effective, but none are entirely curative in nature. With that said, out of the box thinking can and should be utilized. However, the approach is risky and can be very dangerous.

He recently did a presentation on immunotherapy, specifically recombinant interleukin-2 (rIL-2), and it’s efficacy against this very disease. As almost all signs point towards an environmental disease and most scientific signs point to AS genetic and protein over-expressions to be treatable by immunotherapy targeting agents, it seems logical to use our patient population in a study of some sort with this treatment. There are many hoops to jump through, but a drastic approach seems to be the most logical path at this time. He wants to somewhat treat it as a pre-clinical clinical trial. In other words, get some case studies to develop a compelling case for this approach. I will go into more detail later, especially when I know more as this is all very new. Case in point, he emailed his boss as I was sitting in the room about getting this started for us. In short, it would mostly be administered at a very high dose, an experimental procedure for insurance purposes (read expensive for us out of pocket), and I would have to live in Houston for awhile.

He said it best when he mentioned my family and the Christmas card we sent him. He looked at it and said it does me no good to sit around with coworkers patting him on the back, saying you did your best, that this patient made it seven/eight/etc. years more than expected. No. His goal is simple. He said he looks at our beautiful Christmas picture and that is what he wants to preserve and protect. His patients dying far before their time gives me no comfort when it is said we treated by the book and did the best we could. Don’t get me wrong, as I am sure my other doctors feel the same way, but Dr. Ravi is willing to take the risk. By doing the status quo, the odds are forever against me. Something needs to change, and I am healthy enough to do something drastic, or at least I think I am. I owe it to my family and fellow patients of AS to try something new and attempt to find a path for a better treatment.

We have by no means made a decision. I haven’t even discussed it in depth with anybody. I have a lot people working out the logistics and details, but please do not hesitate to give your input.

Please continue to pray for us. It isn’t an easy task to decide such a drastic approach, especially when we don’t even know what we are treating. However, do we do this now (with any treatment really), or do we wait for the odds of recurrence to come to fruition? I vote for the first option.

Thank you for supporting us, loving us, helping us spread awareness, and most importantly, for carrying us on your shoulders. It is incredible what you all have shown us and each other, and there is not a day that goes by that I do not stop to smile about what God has given me through all of you and yes, through this journey. I’ve learned to forgive easier, love stronger, live more, stress less, and share more. Live with no regrets and please protect each other. Everybody needs somebody sometimes. It is life, and let’s always remember to live it together with each other and not against each other. Through you all, I know what we are all capable of. Please do not forget what I am saying, and please take it to heart how truly amazing and special you are not only to myself, but to all whose lives you have entered. I love you all so very much. Thank you for loving me.

Posted in Uncategorized | 5 Comments

Scans translated in “Ryan’s Terms”

First, SUV is the value they place on the radiotracer uptake observed in your tissue based upon a set/normal value (in this case, 1). Values below 5 aren’t usually of great concern, but are worrisome. However, in my case previously, the SUV of my now removed tumor was only 4.3, not much higher than the current value of the most troublesome spot in the pleura.

If you don’t feel like the whole report, you just skip to the impressions section of ANY report and the radiologist gives a synopsis of the findings, sort of in layman’s terms.

Impression 1: you would be hard pressed to ever get a PET scan without any nodal activity. They are your lymph nodes and are always active in fighting off something. With a disease like cancer, you always become suspicious of random nodal activity. The nodes in question are small with very little uptake (1.8 and 2.7), but there location is what is worrisome as well, especially the mediastinal ones (mediastinum is the region defined between your lungs and pretty much from the bottom of your neck to the bottom of your sternum). The key to remember is the comparison to previous scans. It is wonderful that they have not grown at all. It is not wonderful that they were there previously in any extent. Again, comparing a 1.7 x 1 and 2.4 x 1 to previous nodal imaging is minimal in concern as things can and do change all the time with your lymphatics. My question to the good doctor on this impression is if he is concerned or not, and to what degree. What is a normal value of nodal activity when actively fighting of, let’s say, a cold? Is there a cluster of enhanced nodes, or just a few (cluster would possibly indicate infection or a cold of some sort)?

Impression 2: This impression is the most worrisome for me. For those that remember, when I had my surgery for my lung removal, the surgeon took a pleural implant that looked suspicious (in other words, a section of the pleural lining). The pleura is the lining of your lungs – it is a double layered membrane (visceral and parietal pleura) with pleural fluid in between. The main purpose is for friction reduction between your lungs expanding and contracting with each breath against other body parts (the same goes for your heart except it’s called visceral and parietal pericardium with pericardial fluid that does the exact same friction reduction).

Any who, this area has always been a very big concern and is the main reason for 6 months of additional chemo after surgery. The most detectable thing with pleural disease is a pleural effusion – build up of fluid in the pleural space. I see no mention of this but I don’t know how much of my left pleura is still in tact. As far as postoperative inflammatory changes (in other words, you get cut, your body responds in healing via an inflammatory response), I am quite skeptical. However, it was a massive surgery so I am unsure as to how long you can blame post inflammatory response as a cause for remarks on a scan. My questions to Dr. Ravi are as follows: what are his impressions of the mass? with a year from surgery coming up, how long can one expect post inflammatory responses to register any kind of remark on a scan? If he suspects disease, what is the next step?

Impression 3: My thymus has been enlarged and active since the beginning. It is quite common to happen while on chemo. Nothing much to report on this except I am curious as to what the normal physiologic glucose uptake of the thymus is. And is the doctor concerned about this.

This is it in a nut shell. Don’t hesitate to ask any questions because it not only teaches you, it allows me to learn more as well and to take a closer look!

I love you all!

Posted in Treatment Progress | 3 Comments

The Fight Continues

I very much wish I had better news. The longest week of my life followed by not good news has truly wiped me out.

Dr. Ravi not being there today truly compounds to the issues at hand. I’ve never needed a specialists input more than I do right now.

There are some very suspicious areas that have shown up and are concerning for metastatic disease. Several lymph nodes, thymus and left pleura.

For you to get an idea of what and why, I attached my PET scan results. If we are going off of prior PET results, the findings are not good at all. I emailed Dr. Ravi.

At this time, life is a fog, once again, and I absolutely hate being in this position. You walk around and hear noises in a very busy airport. You hear children laughing, people laughing, people discussing life, business, and you wonder, how can they be so happy when my life is just in shambles, again? You just can’t focus on a single thing, and unfortunately, I am all too familiar with this feeling of pure torture and fear.

With that said, I’m not dead tomorrow, or next week. We have plenty of fight left in us, and fight we will. Please pray because the prayers are working, but just not in the way we think they should. It’s not our plan. It’s God’s plan. It is not wildly metastatic, nor is it effecting any vital organs.

It’s just not my level of comfort at all to be traveling home without a plan or the opinion and well-respected expertise of my specialist. That in and of itself is tearing me apart. Please pray he calls/emails me back. It’s like we are stuck in the middle of a very bad dream and no way to get out until I hear the voice of my doctor.

Please keep my family, especially my beautiful wife and children, in your prayers. If the results are indeed disease recurrence, it is going to be a very tough road ahead. We will let you know more when I hear back from Dr. Ravi.

I love you all, so very much. Do not be discouraged by the lack of the very much expected and anticipated results of NED. We will get there again.

I love you. And thank you for caring so much. I know I don’t have to say this, but I want to: please give me a little time to respond to all of your amazing messages. We are strength in numbers, and we will beat this….again.

Please don’t be ashamed to like this status or comment. It lets me know who and where I reached because so many of you amazing people have been worrying and texting.

If it makes you feel better, I love little cute bunny rabbits. You can like that part of my status.

We love you.

01-08-14 scans 01-08-14 scans

Posted in Treatment Progress | 7 Comments

3-Month Scans

And we’re back in the game! Sorry, not really a sports related thread. Although, there is a winner and loser I suppose. Right now, I suppose if you wanted it to be a sports related thread, I would currently be on offense against cancer while just playing defense the last couple of years. Longest. Game. Ever!

I’d like to think I currently have the (multiple sport analogy so pick your own sport paraphernalia – I’ll pick ball) and almost to the (multiple sports so pick your goal scoring technique – I’ll pick soccer, aka football, net) to score the game winning point. Anyway, I digress.

MD Anderson on Wednesday (Jan 8) for blood work and PET scan. PET scan will be at 1800 at MD Anderson on Wednesday followed by a consult with Dr. Ravi to figure out my life at 1400 on Thursday (Jan 9).

This is followed by a consult with Dr. Tap at Sloan-Kettering in NYC on Jan 14 at 1415.

PLEASE pray for the most amazing news to date. We need this; I need this.

Thank you for caring so much. I love you all very much.

Posted in Uncategorized | 6 Comments