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.
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.
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.
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.
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.