Hello Everyone! I have some fantastic news! My 90-day follow up PET scan results are in. As a reminder, this is 90 days after my Proton Radiation Therapy. My last chemo was January 17th, 2019, and my last proton treatment was April 15th, 2019. We had to wait 90 days to allow any inflammation to subside before we could do the PET scan. So, without further ado, the results…
The doctor said that Blobby is completely AWOL, MIA, gone, nadda, zilch. Apparently he did not even leave a mail forwarding address. To be honest, the doctor was surprised. With how large my original mass was, he told me from the beginning that there would likely be a golf ball size mass leftover. He said we would monitor that, and make sure it did not show new activity. But… the aforementioned expected golf ball did not become a reality. As the doctor scrolled through each slide / slice of my scan, you could plainly see that there was not even a hint of a mass anymore. It is as though it never happened.
Thinking through this creates quite the paradox in my mind. If you look at my body pre-cancer… and look at my body post-cancer, it is practically identical… it is as though it never happened. If a tree falls in the woods, but there is nobody there to observe it, does it make any noise? In my case though, I was there to observe it… I clearly know that the cancer formed, was treated, and is now gone. So from an outside view, it could appear that it never happened, but from an inside view it clearly did. This causes me to sit back and ponder on two things. (1) How great our God is and how blessed I am that he showed mercy and grace and allowed me to be fully restored… and (2) Why did God decide this tribulation was needed for me in the first place? God is in control of all things. He gives and he takes away (the story of Job is a good example). God puts us through challenges to grow us. Keeping these things in mind, I feel it is very important for me to reflect on all aspects of my completed journey and discern what lessons I have learned. It will also be smart for me to document them so I can go back and revisit them on a periodic basis. Anyone who has read the book of Judges (or even Exodus) knows how easy it is for us to forget what God has done in our lives. We often look at the Israelite’s and ask ourselves “how can these people be so “dumb”? How can they keep making the same mistakes over and over?” In reality, we are all the same. If we don’t constantly refresh ourselves on the blessings God has out-poured on us, and reflect on the lessons God has taught us, we are quick to forget.
I am still working on compiling a detailed, comprehensive list on lessons and truths I have learned about God and myself through this experience. It will be my intention to publish them on this blog when I have it finalized. I will called it “Epilogue” on the main menu of the blog. I am also going to purchase an official domain for this blog and make it searchable on Google. My hope would be that my story can be an encouragement to anybody who may stumble across it when searching for things like “lymphoma”, “cancer”, etc. I pray that maybe when they need it most, they will read some of my posts and see who God is and who they can put their faith and trust in to help them through their trial. It has been made clear to me that in addition to teaching me lessons and truths about God, my story is intended to encourage others and point them to Christ.
Dear Heavenly Father, I humbly come before You today Lord, seeing and knowing that You are all powerful, and in control of all things. You have shown me first hand Your mercy, grace, and healing powers. You have taught me that we never know what tomorrow brings, and that it is critical that we know You as our personal savior. This matter is of upmost urgency for all of us. We should not put off until tomorrow, what we should do today. At the top of that list is daily sharing the Gospel and our testimony with those around us through our words and actions. Lord I pray that You would use this blog to help encourage others, lead others to a deeper understanding of who You are, and ultimately help lead others to salvation. I pray that You will use me in a mighty way for the up-building of Your kingdom. Help me to never belittle or hide the testimony that You have given me. Thank You Lord for all the people who have diligently prayed for me over this past year. Prayer is the most powerful tool You have given us, and we should never squander it. Thank You God for life. Amen.
Hello again everyone! It is with mixed emotions that I write to you all today. I have overwhelming joy that all of my treatments (both chemo and radiation) are now complete! However, we are also coming to a point where I must decide the future of this blog. After much pondering and prayerful consideration, I have decided to take a hiatus from the blog until my follow-up PET scan is complete. I do not have an exact date for the PET scan, but I know it must be at least 90 days after my last treatment on April 15th. This would put it somewhere around July 15th.
What you see above is a countdown timer to July 15th. Once I have a firm date, I will update the counter, so it is accurate to the exact date, and I will post the exact date by the counter. This scan will hopefully be the closing chapter of this adventure I have been on. Assuming it comes back clear, at that point, I will officially be in remission and labeled a “cancer survivor”. I would like to encourage everyone to join me back at the blog after this hiatus. My goal during this waiting time is to type up a “epilogue” to my story, which I will post. This epilogue is going to contain a synopsis of what all God has taught me through this journey. It is clear to me that God has a purpose for everything. Looking through that lens, I have made personal notes along the way of areas that I felt God was trying to teach, guide, and change me. I would like to share those with everyone, in hopes that they may be an encouragement to each of you and some might benefit likewise. If you would like a reminder to come back and see the PET results, and read the epilogue, please put your email address in above, and click submit. I will send out 1 email as a reminder when the scan is done, and the epilogue is posted. I promise I will not “spam” your email accounts! In case you don’t recognize my email address, the subject line to the email will be “PET complete! Come back to Blobby’s world for the conclusion!”
While I do not know all of you readers by name (there have been over 800 unique IP address access this site), I do pray for all of you, and will continue to do so. Please continue to keep me in prayer as well, as I return back to “normal” life, hopefully applying the lessons God has taught me through this process.
Dear heavenly Father, on this resurrection Sunday, I want to thank You for sending Your Son to die on the cross for my (our) sins. Thank You for Him rising on the third day, and returning to You in heaven. Thank You for sending the Holy Spirit to indwell within us, to teach and guide us. Thank You for Your grace and mercy that You show each and every one of us. I pray for all of my fellow blog readers. I pray that over the next 3 months, that You will be with them each and every day. I pray that You would heal them when they need healed, comfort them when they need comforted, and encourage them when they need encouraged. Most of all I pray that if they do not know You as their personal savior, that You would soften their heart to receive You, and that You would put someone in their path who can help show them in Your Word the Bible, what it means to follow You (readers, you can also navigate to the post on Day 23 for more information). Finally, Lord, thank You for helping me get through all the treatments in my journey. Please continue to be with me over the next 3 months as I eagerly await the PET scan showing that I am cancer free. Amen.
Next blog update will TRY to be posted by Saturday, April 20th, at midnight.
Hello everyone! ONE DAY LEFT!!!! Tomorrow (Monday, 4/15) will be my last proton treatment! To commemorate the event, there is a bell that patients get to ring 3 times. My family, parents, and in-laws are driving to the proton center with us tomorrow to celebrate with me. I have watched several “graduations” of other patients, and they usually give a short speech before they ring the bell. Here is what I think I’m going to say:
Non-Hodgkins Lymphoma by the numbers:
Numbers of days since diagnosis: 235
Size of mass: 6 inches x 3 inches
Number of weeks of chemo: 18
Miles Driven for Proton Treatment: 7000
Hours on the road: 140 Hours
Number of proton treatments: 25
Number of friends I have made and number of people praying for me through this process: Countless
The blood that Jesus shed for my sins, and the mercy and grace that God has shown me: Priceless
The first bell ring is for God, and all that He has done for me at the cross, and through this process. The second bell ring is for my friends and family that have supported me every step of the way. The third bell ring is for all the staff here at the proton center that take care of all of us patients with love and kindness.
So, what is next? I have a follow-up visit with my oncologist here in town on May 9th. I believe I will get a schedule for my next PET scan at that visit. My understanding is that I cannot have a scan until 90 days after radiation, to prevent false positives. That would put it sometime around July 15th, but I’m hoping I will get a firm date. This PET scan will confirm if I am fully in remission. I also have a follow-up visit with my doctor at the proton center on May 22nd. This visit is simply to make sure that I have not developed any odd side effects following the radiation. The doctor would like a CT scan just before the visit to review and see how things look. This scan will NOT confirm remission. Only the PET can do that.
My plan is to update again next Saturday, and I will have a plan for the future of the blog at that time.
Dear heavenly Father, thank You SOOOO much for everything you have done to help me through this cancer battle. Time flew by so quickly with the radiation. It is hard to believe that I only have ONE MORE DAY LEFT! You have shown me so much mercy and grace through this process. Thank You for all the prayer warriors and friends You have sent my way to help me in this battle. Please provide traveling mercies one more day as my family drives down to the Proton Center with me. You are an awesome God, and worthy of our praise! Amen.
Next blog update will TRY to be posted by Saturday, April 13th, at midnight.
Hello everyone! I now have 14 of 25 radiation treatments complete! Yea!!! So far I have driven for 76 hours and 59 minutes, and traveled 3857.1 miles back and forth to treatment. While I have really put on the miles, my FitBit says that I’m still short on my steps… so sad ☹. Haha. (For those who may not know, FitBit’s are watches that track how many steps you have taken in a day, to help encourage you to walk more and stay “fit”). The drive between my house and the proton center may be becoming monotonous, but my wife has gone with me every day and kept me company. I think we have talked more in the last 14 days then we have in the last 13 years! Haha. (Man, I’m full of myself today)… Anyway, so the plan moving forward is as follows. The next 4 treatments will remain consistent with what I have been doing. They are covering the full original mass area, with a low dose of radiation. Starting on treatment 19 (going till the end), they will shrink the target area to just the small portion of mass that is actually still left, and crank up the power. I joke that they are going to set the proton beam (in deep voice) from “Stun” to “Kill”. Sorry Blobby, you are no longer welcome here.
So far, I still have not experienced any side effects. The doctor is continuing to monitor for redness on the skin, shortness of breath, fatigue, trouble swallowing, sore throat, cough…. So far… Nothing. I feel very thankful that God is taking care of the side effects for me thus far. I’m still able to work and spend time with my family, almost as though nothing is wrong at all. I am also having the opportunity at the proton center to meet with many other people who are going through their own cancer battles. One common theme that I have found in talking with other fellow patients is that “God is Good”. It is a blessing to see so many other people also praising God through their trials.
The insurance company came back and denied my claim. The next step is the peer to peer appeal, which could take several weeks to complete. Paraphrased, the denial statement from my insurance said that while they agree and understand that X-Ray radiation will likely damage my heart, there is not enough evidence at this time to prove that protons will not do the same thing. From the research I have done, that is probably a true statement due to the technology being so new, and the number of lymphoma patients being treated with protons being so low (especially younger patients). Most lymphoma’s do not need proton therapy because they are in a location that the x-ray’s can hit without hitting vital organs in collateral damage. The bottom line is this… I’m afraid that the peer-to-peer appeal with my doctor is going to wind up being “he said she said”, and in the end, everyone will have to agree to disagree on whether the proton technology is “worth” the extra cost. For me, it is worth it, regardless of the insurance decision. X-Ray’s were a guarantee to damage my heart. Protons are a “promissory note” that my heart will be just fine. I’m willing to pay for that chance! With all this said, I am still praying that if it is the Lord’s will, that He will allow the insurance to cover the cost. But even if it is not the Lord’s will, I still know that God will help me take care of the expense. He has already allowed me to qualify for financial aid giving me a 50% off discount. He has blessed me with some unexpected funds in the past weeks. He has proved Himself faithful time and time again, and my needs have always been covered.
I’m still finding it difficult to manage my time with all of this traveling and work, so my plan will be to update the blog again in two weeks (Saturday, April 13th). At that point, I should only have 1 treatment left!
Dear heavenly Father, thank You so very much for providing continual traveling mercies for me. Out of all those miles, I have only hit 1 traffic jam, and the weather has been beautiful. I know the forecast is going back and forth about the possibility of snow this coming Tuesday. I pray that You would help me have the foresight and wisdom to know if I need to spend the night near the proton facility that night, or if the roads will be open and clear. Thank You for helping me avoid all side effects so far! I pray that this blessing would continue through the 2nd half of the treatments. Thank You also for always taking care of my needs, financial or otherwise. I know that You will help me pay the medical expenses with or without the help of the insurance company. You have proven Yourself faithful time and time again, and I have no doubts that will continue. I love You Lord, always, amen.
Next blog update will TRY to be posted by Saturday, March 30th, at midnight.
Hello everyone! Sorry I’m late. It turns out working full time (even the modified schedule), and commuting for treatments everyday is more challenging than I anticipated. The challenge is not really on the physical side, but rather on the time management side. With this said, I’m going to go ahead and bump the next update out 2 weeks. I will try to update again on March 30th.
So, lets talk treatments. As I mentioned, the physical side so far is a moot point. I don’t feel anything during the treatment, after the treatment… nothing. I even joked with my wife wondering if this was the biggest money racket ever, and they are healing with placebo effect, not protons. Jokes aside, the doctor told me I probably would not notice any side effects for the first 3 weeks. So far he is correct. Let me describe what how a typical treatment visit goes. Get ready! There is a surprise ending!
I arrive at the proton center and walk in. I have a badge that I scan at a scanner at the front desk. I sit down. Within 5 minutes, a proton lab tech comes and gets me (literally 5 minutes, even if I’m a little early. This place runs the most efficient I’ve ever seen). I go into the proton beam room and lay down on the “table” of the machine in the mold they made of me at the simulation. They line the table up using my tattoo dots. This is just a rough line up process. They then take an x-ray. This x-ray is now on the computer, and they maneuver the x-ray to perfectly overlay the simulation scan. Lets say they have to slide it 1 inch left, 0.5 inches up, rotate 3 degrees… etc. They then hit a button, and the table I’m laying on automatically corrects the exact amount they had to shift the x-ray. The table can move in 6-Axis. Once they shift the table, they take another x-ray to make sure that I’m now perfectly in line with the simulation. At this point, they start the “program”. The proton beam “gun” moves into position. This is not what I pictured at all. The opening of the gun is about 12 inches by 18 inches. There is a lens in the front of it about 2 inches thick. The gun actually stays stationary during the treatment. In an earlier post I thought it was going to be like a 3D printer. Instead, it is actually more like a laser engraver. The gun is in a fixed point, but the proton beam is refracted at various angles to “paint” the tumor area. The depth is still dictated by proton velocity coming out of the centrifuge. The lens I mention is translucent, so I can see up the “barrel” of the gun. It looks like a tunnel heading somewhere, but you can’t see the other end. Now that everything is in position, the technician steps out of the room, and you hear a door bell indicating the proton beam is about to go live. Here it comes!!!!! I’m ready!!!! I’m looking up this gun barrel tunnel (keep in mind its aimed at my chest, but it’s big enough I can see in it. If someone was being treated at a different location on the body, they may not see the lens at all). I’m ready to see flashing lights, particles / protons flying everywhere…. Still waiting… Still waiting… about 30 seconds pass and the technician is back in the room. I’m thinking “o know! the machine is broke!”. Here is the surprise ending I promised, cause it surprised me. The tech said “all done”. WHAT!!!!! Nothing happened! But I guess it actually did. Come to find out you can’t see microscopic particles moving at 2/3 the speed of light. Who knew? At this point I go back out to the main lobby, and I’m on my way. I’m in and out in about 15 – 20 minutes total. That’s quite the daily drive for 20 minutes of “action”…..
I did participate in a behind the scenes tour of how this technology works. Let just suffice it to say… crazy. I enjoyed it thoroughly, but I don’t want to bore everyone with all the nerdy details (yes, I’m a nerd, hence the enjoyment). Honestly, it would probably take me an hour to try to type out everything that I learned and saw. Did I mention I’m struggling with time management at the moment? If any of you readers are truly interested, I was told during the tour that there are some great YouTube videos on how all this works. I’m thankful that God gave humans insight into how to harness different aspects of biology, chemistry, electricity, etc to even make this tech possible. I also continue to be in awe at how complex He made our bodies.
Dear heavenly Father, thank You for providing traveling mercies thus far through my treatments. As of today, 5 down, 20 to go. Thank You for helping me maintain a good level of energy and stamina to deal with working and treatments at the same time. If You allow the next 20 to go as well as the first 5, I am in great shape. I continue to pray for the insurance aspect. I pray that these invisible protons are going to the correct places in my body, and not doing damage to vital organs. It gives me a new perspective on “blind” faith. I have faith that You know what is best for me, that You are guiding the doctors, and that You are guiding the protons. I have faith that if its Your will, 90 days after treatments end, I’ll have a PET scan that shows I’m cancer free. Thank You for all that You have done for me and how you have provided for me every day of my 33 years on this earth so far. I love you Lord, Amen.