Day 339 – Sunday (07/28/19)

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.

Day 241 – Sunday (04/21/19)

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.

Day 234 – Sunday (04/14/19)

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.

Day 219 – Saturday (03/30/19)

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.

Day 207 – Monday (03/18/19)

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.

Day 198 – Saturday (03/09/19)

Next blog update will TRY to be posted by Saturday, March 16th, at midnight.

 

Hello everyone!  It has been two weeks since we last spoke.  For the most part, these two weeks have been uneventful from the health side of things.  I have been able to work, and I’m honestly feeling really good.  My stamina seems to be back to my pre-cancer normal.  My diet is going very well (low sugar, low preservatives, less animal protein).  I received the expected call from the Proton Center, and they have my program ready.  I will start my Proton Treatments on TUESDAY, 3/12/19.  These will be Monday – Friday for 25 treatments.  This makes my last treatment on Monday, April 15th (as luck would have it… my anniversary).  Assuming the treatments are successful, this is pretty cool.  It means that April 15th will represent my wedding anniversary, my remission anniversary, and of course… tax day!  But I digress.  The treatments only last about 30 minutes each day.  I’m told the side-effects should be very mild, and I will be able to keep working during this time.  I will be working a modified schedule to accommodate the treatments, but I will still get in my 40 hours a week.  My company has worked with me in this regard to create a schedule that meets my needs and the business needs, and for this I am very thankful.  I plan to update the blog next Saturday (March 16th), so I can let everyone know how the treatments actually go.  For those interested in the technical side, I plan to explain everything I see and experience from my point-of-view.  I’m pretty excited about the technology, and I’m hoping it will be pretty cool.  After all, the machine that shoots the protons is a $300 Million dollar machine, so it has to be cool, right?  Side note… I still have not heard an answer from the insurance company regarding the first appeal.  At this time, I’m proceeding as an out-of-pocket patient… but if it is God’s will, I’m hoping that insurance will step in.

One last thing as I wrap up for this time.  The wife of a friend of mine was recently diagnosed with cancer also, and my understanding is the prognosis is not so good.  I ask that you all would pray for her, just as you have prayed for me.  I did not ask permission to include her name, so I won’t for now, but God will know who your talking about.  My friend and his wife have accepted the Lord as their personal savior, so at least they have the peace of the Holy Spirit as they are heading down the treatment paths.

Dear heavenly Father, I come to You again with a thankful heart.  You are continuing to heal me, and I continue to get stronger every day.  I pray that the doctors who have spent the last two weeks preparing my Proton program have made no mistakes.  If they have, I know that You can reach down and fix the program on Your own before my treatments begin.  I pray for safety of travel as I go to and from the Proton center.  I pray for my wife and children as we start this next (and hopefully final) stage, that they will quickly adjust to the new schedule we will live for the next five weeks.  I pray for my friend’s wife.  God, only You know the outcome and what the future holds.  I pray that she will trust You through this storm, knowing that Your ways are best, no matter what.  Please guide and direct her as she makes treatment decisions.  You are an awesome God, and You prove Yourself worthy of our praise every day.  Amen.

Day 184 – Saturday (02/23/19)

Next blog update will TRY to be posted by Saturday, March 9th, at midnight.

 

Hello everyone!  This past week was another very busy week.  We will start with the endoscopy.  The procedure went smoothly.  The doctor took several pictures to show me, and said that he really saw nothing wrong.  The only thing he saw near “the spot” that was showing up on the PET scan was evidence of where stomach acid had “backed up” to the upper part of my stomach, lower part of my esophagus.  Basically, just the irritation from the acid could have caused the “false positive” on the scan.  He went ahead and took several biopsy’s, and all of those have come back normal.  It was a huge relief to hear this.  Now we know my stomach is good, and we just need to focus on finishing off Blobby.  Then life can return to some sort of normal.

So, about Blobby.  I met with the proton doctor for a consultation this week.  He is very confident that 5 weeks (25 treatments, M-F) will finish off Blobby.  I asked him his opinion about doing any more chemo.  He said that he did not see it necessary at all.  With that said, I have made my final decision to proceed with the Proton radiation, with or without the insurance company helping to pay for it.  I was able to fill out a financial assistance application.  It has been reviewed, and they cut the price for me from $40,000 to $20,000.  This is a huge blessing, in the event insurance won’t help.  If they do help, I will owe $0 (already hit my out-of-pocket max).  We probably will not have the final answer from the insurance for up to 6 weeks (they will decline, doctor will appeal, if they decline again, doctor can appeal one more time… each appeal being 3 weeks typically).  So the irony here is that I will already be done with the treatments before we even know what insurance will do!  With that said, I have to make a 25% down payment at the first treatment, and start monthly payments thereafter (max term of 36 months).  In the event insurance comes through, I get refunded what I have paid.  If they don’t come through, I just continue the payments.

I had a second appointment with the proton doctor (after the consultation), and they did all the prep work needed to start programming the machine.  They basically did a “simulation” where they laid me down on the same type of bed that I will lay on for treatment.  They then took a mold of my upper body, which I will lay in each time for treatment.  This mold will hold me in the exact same spot every time.  They also had to tattoo me with three small dots that they will use to line up my body (in the mold) to the machine.  Next, they had to wrap a compression sleeve around my stomach to control my breathing while I’m on the bed.  Then they scanned me, and mapped my breathing pattern.  This is important, because as the proton beam is “shooting”, it has to adjust the depth of penetration based on your chest movement from breathing.  Its pretty awesome we have technology that can do that.  Speaking of technology, I’m going to nerd out on you all for a minute.  So the way this proton deal works… They take a hydrogen atom (which has 1 electron and 1 proton) and they strip the electron off of it, causing the atom to have a positive charge.  They then put the atom in a centrifuge and “spin it up” to a pre-determined velocity, and shoot it into you.  The velocity it shoots, and the matter it travels through as it goes into your body, determines the depth that it will penetrate.  This is how they keep it only hitting the tumor, and not “traveling through” to hit other organs.  The proton beam “sweeps” the area being treated in 2mm increments… much like a 3D printer works.  Again, I’m blown away that God has given us the ability to figure all of this out!  Long story short… after the simulation, the doctor now has all the data he needs to be able to write the program for the proton beam.  This process takes about 2 weeks.  The estimated start time for the 25 treatments is March 11th, with my last treatment being April 12th.  After this, they will wait 90 days before doing another PET scan, to confirm that I am officially in remission.  They have to wait the 90 days to allow the “radioactivity” from the treatment to calm down, or it will show up on the PET scan as a false positive.

There are no new events (doctor’s appointments, etc) planned for the next two weeks.  Really, I shouldn’t have to do anything else from the medical side until March 11th.  With that said, I will not post an update next Saturday (March 2nd).  Instead, I will wait and post an update on Saturday March 9th, where I can confirm the plan outlined above is still intact.

Dear heavenly Father, thank You for allowing the results of the endoscopy to come out perfect.  This is one less thing I have to think about!  Also, thank You for allowing me to qualify for a 50% discount on the Proton treatments.  In the event that insurance does not help, this discounted amount is huge blessing.  With that said, I continue to pray (if it’s Your Will) that You would allow the insurance company to see the medical necessity in this case.  Also, over the next two weeks, while the doctors are writing the program for my treatments, I pray that You would give them the knowledge and skills required.  They were all very nice and patient people when we met them this week, and I thank You for giving me peace about going this route of treatment.  I pray that as we go through the treatments, and wait the 90 additional days for confirmation, that You would allow Blobby to be completely eliminated, and that I would be deemed officially in remission.  Thank You for all that You do for us, each and every day, amen.

Day 177 – Saturday (02/16/19)

Next blog update will TRY to be posted by Saturday, February 23rd, at midnight.

 

Hello everyone!  I wish I was able to come to you with fantastic news for this weekly update.  Unfortunately, the reality is I was thrown a curve-ball this week.  Lets break this into two parts.  Part one went as planned.  I had the consultation this week for the endoscopy to check the spot in my stomach.  The consultation went fine, no surprises, and I’m scheduled for the endoscopy on Monday (late afternoon).  I’m not worried about this.  I think it will all go smoothly, and we will get confirmation the “spot” is nothing.  Note, it is my understanding that they will biopsy the spot no matter what.  Whenever I have these results, I’ll be sure to include them in the weekly update.  Now for part two.  I also had the consultation with the radiologist this week to discuss starting my radiation.  Enter the curve-ball.  The radiation doctor explained that with radiation, we need to treat the entire area where the tumor originally was.  Even though the tumor has shrunk significantly, there is a possibility that cancer cells remain in the original tumor location.  This makes sense.  Problem…  based on the “values” of my latest PET scan, I need to get a radiation level of 50 (on something called the grey scale), for 25 days.  Based on the area they have to radiate and the dose/time it will take, they have calculated that my heart will be exposed to too much radiation.  The amount of radiation it would get would likely cause my heart to fail in 10 years.  Seeking a heart transplant at the age of 43 does not sound that appealing to me.  So…  I was given a couple options.  (1) There is a newer technology out there called “Proton” radiation (as opposed to “photon” radiation… which is the type we just discussed).  Proton radiation has the ability to blast ONLY the tumor area, and miss the heart completely.  (2) I could take two more rounds of chemo, in hopes that it lowers the “uptake” value of the tumor (the number they got from the PET scan) to a point where I may only need a dosage of 20 on the grey scale for 10 days.  Supposedly, statistics say that the amount of radiation my heart is exposed to (using photon therapy) in this case… would be low enough that it would not “kill” my heart.  Note, however, that there is no guarantee that 2 more chemo’s would reduce the uptake value to this lower level.

Reading these two options, you may say this is a no brainer.  Go with the protons!  No more chemo required, AND no radiation to the heart (not even a lesser dose).  To be clear, this is the direction I’m heading.  I have a consultation with the Proton doctor next week.  There is only one caveat to the Protons.  Protons are MUCH more expensive than photons.  You might guess…. my insurance does not cover protons.  Now… the proton doctor is going to attempt to make a case that the protons are medically necessary.  However, they told me they had a case very similar to mine (with the same insurance company I have), and the insurance company still refused.  The only difference in that case and mine is that the gentleman in the other case was “significantly older” than me.  This may sound terrible… but basically they looked at it that when your 70… doing damage to your heart that may cause failure in 10 years did not deem “medical necessity”.  The proton doctor is hoping that my young age will help my case for necessity.  I’m not going to get on my soap box about insurance companies and our health care system.  That can wait for another day and time.  In the end… if the insurance company will agree to cover this due to medical necessity, then I will owe $0 (because I hit my out-of-pocket max with my 6th chemo in January).  If they won’t cover it, and I want to continue on the Proton route… I will owe $40,000 out of my own pocket (so now instead of a Pepsi Can in my chest, I guess I’ll have a new car?  Haha).  If this happens, I will be able to setup a payment plan (I don’t know the terms… but I know it is 0% interest… and hypothetically if I pay $100 / month… I’ll pay it off in 33 years).

With all this said… my current prayer request for my fellow blog readers is that (1) My endoscopy goes smoothly on Monday (and that nothing is found), and (2) that the insurance company will cover the Proton Radiation.

Dear heavenly Father, I’m not going to lie.  This week took me by surprise.  However, what is so awesome about You… is that it did not take You by surprise.  You knew this was coming all along.  Its simply another opportunity for me to grow my faith, and for You to get the glory.  I pray that You would be with the doctor during my endoscopy, and that everything will go smoothly.  I pray that You would soften the heart of the people making the decision on the insurance and that they would see the protons as medically necessary in my situation.  God, help me to be okay with the fact that I may wind up having to pay out of pocket.  I know if this becomes reality, that You will continue to provide for me tomorrow, just as You have done every day in the past.  There has never been a day where I or my family have had to go without a need met.   You are always there for us.  Changing directions, I pray for the Runk family in Haiti.  We had a group from our church heading to Haiti on a mission trip to help the Runk’s.  However, due to a major uptick in violence and unrest, the trip has been postponed, and the Runk family has told us it is the worst in Haiti that they have ever seen since their time down there.  Please provide safety for them, and wisdom for our church group as they monitor the situation and look for a possible way to reschedule the trip.  Thank You Lord for all that You do, amen.

Day 170 – Saturday (02/09/19)

Next blog update will TRY to be posted by Saturday, February 16th, at midnight.

 

Hello everyone!  Below you will see my 3 PET scans so far, and the progress we have made between each one.  You will notice in the latest one, you can’t even make out the outline of Blobby anymore.

So, what did the doctor tell me this week?  Overall it was very good news.  Let’s start with Blobby.  He is pretty much completely evicted at this point.  The PET scan showed very little to no activity.  This confirms that I will not need anymore chemo.  We will still go ahead with radiation as planned.  The purpose of the radiation is to kill off any lingering microscopic cancer cells that may not have been detected on the PET scan.  The benefits of the radiation is that it decreases the likelihood of any re-occurrence.  With how far I have come, I’m not going to take any chances.  If radiation will help prevent this from coming back in the future, I’m all in.  I meet with the radiation doctor next week for a consultation where he will explain how this process works.  I will provide the details from that visit in my next blog post.

Now for the stomach spot.  When the doctor scrolled through all the PET scan slices, he pulled up the stomach spot from the first scan and the last scan.  The first scan was a bright, vivid circular spot.  The most recent scan had a slight halo, non vivid “blur”.  Basically, the spot was gone.  Odds are, the spot was an ulcer caused by stress, and it has (is) healing itself.  While the doctor is very confident the spot is not cancer at this point, he wants to cover all his basis.  This means I will go ahead and have an endoscopy performed, so they can be 100% sure.  I have a consultation for this next week as well.  The actual procedure date has not been determined yet.

In summary, we are making excellent progress.  I am not fully in remission yet, but I should be soon as we get through the radiation process.  After the consultations this week, I should be able to put together a timeline to remission.  On a side note, I have now been back to work for a full week.  I’m feeling strong, no fatigue issues, and I was welcomed back by everyone.  While my days are more hectic now, I feel like life is back to my perception of normal.

Dear heavenly Father, thank You for the great report I received this week.  Thank You for having the spot in my stomach all but disappear.  I understand the benefits of going ahead with the endoscopy to be 100% sure, and the benefits of going through with the radiation.  I pray that You would give me continued strength as we wrap up this chapter of my life.  Thank You for helping me re-acclimate to work quickly and easily.  Thank You for giving me the endurance I need to make it through the days.  I plan to give the church a quick summary/update tomorrow, and I pray that You would give me the words that the congregation needs to hear.  I want to thank them and my family for their support through this trial, and I want to make sure that You get the glory for everything that has transpired over the past months.  We serve a mighty God.  Amen.

Day 159 – Tuesday (01/29/19)

Next blog update will TRY to be posted by Saturday, February 9th, at midnight.

 

Hello everyone!  Please make sure to note the next blog posting day.  I’m going to wait two weeks, because I don’t see anything changing in my status before then.  That post though (on February 9th) should be packed with info, as my PET scan will be complete, as well as my follow-up visit with the doctor to discuss the results.  I should also be given more clarity on the radiation side of things.

Reminder of important dates:

  • February 1st – Return to work.  I have officially turned in my “Return to Work” paperwork, and notified HR and my boss.
  • February 3rd – PET Scan.  This scan will let us know (1) if the lymphoma is gone as expected, and (2) if the spot in my stomach is still there.
  • February 7th – Meet with Doctor to go over scan results (in the afternoon).  This will be a huge day, and I would appreciate everyone’s prayers on this day.

Now for an update on my health since the last post…  I am honestly doing fantastic.  I feel like I’m 95%.  The only thing that I need to get to 100% is exercise and conditioning.  It turns out when you have been out of work for 4 months, and your only exercise has been walking the mall on your good days… that you get out of shape.  I have started (as of yesterday) doing more “vigorous” (not getting carried away) exercise to rebuild my stamina.  Also, now that I know I’m done with chemo and all of its side-effects (that were often made better by indulging in bad food), I’m starting a more strict diet.  For those that have kept up with my whole journey, you know that I went vegan for a few weeks while we waited on the doctors to do something.  Having done a lot of research, and having talked with some friends who went vegan, there are clear health benefits to doing so.  That being said, I will never be able to go complete vegan, due to my love for various food groups outside of that diet.  However, anything you do change helps, and everything in moderation.  My first goal is to cut out as many processed foods as possible (things like little debbies, oreos, fast food… things that you can set on the counter, come back in 1 month… and it still looks the same).  My next goal is to cut out high sugar items like sodas and fruit juices (actually eat the fruit instead).  We will focus on those two goals to start with, then we will see where things go from there.  Some of my vegan friends have told me that if I’m absolutely set on continuing to eat animal protein, try to cut it back to only once a week.  I’m not going to set that as a goal yet, but maybe as things progress.  The bottom line… I now know that I am more susceptible to cancer in the future (either different cancer or re-occurrence) so if I can help limit my risk with diet, I should.

Dear heavenly Father, thank You again for another awesome week.  I’m getting stronger by the day.  You continue to heal my body.  Please be with the doctors in the coming week as we do the PET scan and follow-up analysis.  Please be with me as I return to work on Friday.  Please be with my family as we adjust back to a different way of life / schedule than we have had over the past four months.  I continue to pray for any of the blog readers who are going through their on trials, whether it be health, marriage, financial, etc.  You are and awesome God, and can provide help and comfort for all.  Thank You for all You do, amen.