Ben and the Dragon

Christmas Gatherings #2, #3, and #4, Plus A Sweet Sixteen

Ben

December 31st, 2023

Last Saturday Michelle and the kids trekked town to Tennessee with her parents to attend the second Christmas gathering of the season with family there while I stayed home for work. Then Monday morning, the day of Christmas, we had our own own family Christmas before her parents joined us for Christmas with them. That was a lot of Christmas! 🙂

This week I’ve been enjoying spending some time off from work with the family. Yesterday, we held a sixteenth birthday party for our daughter. I believe she had a good time and enjoyed getting to spend time with her friends. Gosh, Sixteen already… that went by fast! Now I feel like I’m going to blink and 16 will be here for her brothers too.

I’ll be heading back to the hospital for my fourth treatment early this week so I’ll let you know in a few days how that goes. I may be wrong about this but I think they told me last time that this time they’re going to do some sort of follow up scan on me to make sure everything is still looking good inside of me (e.g. I’m still clear of any cancer cells.) So, I can tell you more on that topic after I find out more myself.

Happy New Year!

Life Update

Happy
Christmas Gathering #1

Ben

December 16th, 2023

This morning, I had to get up really early for a security meeting at church. Why does everyone in the world always seem to want to do things super early on Saturday mornings!? Saturday mornings are really the only time I can catch up on the sleep I don’t generally get during the work week. 🙂 It was a good meeting, though. It is important to get everyone on the security team together so we all have a chance to learn more about the job and what is expected of us in the event of a crisis.

After lunch we went to my parents’ house for a little Christmas party. Not everyone attended, but it was still a nice event, and I think the kids really enjoyed it. 🙂

Life Update

Happy
Health Insurance

Ben

December 14th, 2023

Well, it’s that time of year again, health insurance open enrollment, and this year, due to all of the expenses I’ll be incurring for my treatments throughout most of 2024, it’s time to try to try an find a somewhat affordable plan for Michelle and I. This will be the first time I’ve had health insurance in over 10 years. We spent time tonight searching for a health insurance plan that would cover my doctors/medication/hospital visits/etc. as well as local healthcare providers (for Michelle,) but there really is no good option. If you find coverage, it’s crazy expensive, if you want an affordable price, you get no coverage. It really made me consider maintaining my “no insurance” state.

By the way, if you can’t afford health insurance either and don’t already know this, I want to share… at least in my own experience over the last several years, the discount healthcare providers have been giving us for not having health insurance, often referred to as “self-pay,” is around 76%. That’s pretty good if you ask me! So, in spite of this great discount, we opted to try and get a plan for next year that would cover as much as possible since even with that self-pay discount 24% of $56,000.00 is still a whopping $13,440.00.

We ended up choosing a health insurance plan that will cost us about $350/mo. and supposedly claims it will cover what we need covered, keeping our out-of-pocket expenses and deductible pretty low. It really is too expensive, but we can at least afford to carry it through 2024 by using our savings to offset the cost. I really don’t like dipping into savings to be able to pay for it, but it should only be for the duration of next year and it’s better than getting $100,000.00+ bills which I would have to spend potentially the rest of my days paying off, even with the 76% self-pay discount. 🙂

Life Update

Annoyed
Third Immunotherapy Treatment

Ben

December 12th, 2023

Today was my third immunotherapy treatment. It’s a bit of drive to the hospital and then back again, about two hours if there are no delays. It is not really a visually interesting drive either since it is around 98% interstate driving. I think I’m going to have to figure out how to keep myself from getting bored so I don’t accidentally stop paying attention as I drive this several times over the next year. I certainly don’t want to have an accident at interstate speeds. Maybe I’ll pull out some CD’s or audio books to listen to during the drive.

Everything went well again this time. Thankfully I didn’t have to wait around in the treatment room nearly so long as I did last time. They managed to move me around between labs pretty quickly so I didn’t wait long in any one place. However, they did have a bit of a difficult time sticking me in a vein this time, so I ended up with three punctures by the end of it all, ugh. They do their best to be gentle, but repeated attempts are not very much fun for someone who really doesn’t like needles. But, on the bright side, once again I haven’t experienced any noticeable side effects so barring something unforeseen, it appears I should be able to reasonably expect that the remaining treatments next year should go by without me experiencing any negative side effects. 🙂

Health Update

Doctor Visit, Happy
Where Did The Time Go?

Ben

December 5th, 2023

Well, I’d like to apologize to any of you who may have been using this blog as a main source of information regarding my health. I just realized today that it has been a whole month since I posted anything. I got busy and kept saying to myself “I’ll post tomorrow” until tomorrow wound up being today and I realized this evening that you would probably like to know what’s been going on! So, I’ll try to catch you up without being too long-winded. 😀

Now to recap November 2023… Well, in my last two posts I left you with some serious information and then gave you something silly for dessert! So, my dad is now doing much better and is back at home again. My temporary symptoms after that first injection subsided quickly and I was back to normal after a few days. Michelle got to have a fun girls night out with some of her friends and they all painted their own ceramic Christmas trees, the kind with little colored plastic lights stuck into them. Michelle and the kids attended an Ice Hockey game (the local team) and from what I heard later that evening, they all had a good time.

A few weeks ago we had a friend take some family pictures for this year. I haven’t seen any of them yet but I’m sure they’re great. 🙂 On the 21^st I went in for my second immunotherapy treatment. This time things went a little more smoothly since I knew what to expect, though I think they may have forgotten about me for bit because they left me waiting in a treatment room (with no IV) for quite some time. In fact, it was about one and a half “Hallmark channel movie’s” long! 😀 Thankfully, this time I didn’t experience any noticeable side effects, so I’m hopeful that means the first time will be the only time I have any side effects to report.

Michelle and I both had birthdays this month. That makes us both one year closer to AMAZING! Right? Right?… No? Well, anyway. 😉 So the dealership we bought that Toyota from, in October, finally sent us the Tennessee title, in December, so now I can get it titled here. Apparently things in the Tennessee B.M.V. just move a bit slower than here. I didn’t know how good we had it!

Last Wednesday was our church’s Christmas dinner, which is always a nice time. Then the very next night was Madrigal dinner at U.S.I. If you don’t know this already, I was in choir in college and was a part of this production/fundraiser back then. Essentially it’s a nice catered dinner and a Christmas music choir concert all wrapped up into one medieval Irish themed setting. It can be a lot of fun, especially if the court jesters decide to come and pick on you or someone sitting close to you! I would recommend trying it next year if that sounds interesting to you.

Our church also held a “Ladies Christmas Tea” this weekend and it was quite well attended. I think I heard that there were upward of three hundred attendees. We volunteered to help out, though I’m not sure I really ended up being much help! 🙂 The youth group acted as the servers and after seeing how things went in previous years, I must say this year was a marked improvement. I didn’t spot any big mishaps, the kids were well behaved, and everything went out to the tables accurately and in a quick and organized fashion. Great job guys!

Well, in spite of my best efforts, this did turn out to be longer than I had intended. But, I’m almost done! Tomorrow, I have a follow-up appointment with the dermatologist, which I believe is just to give me another once-over to verify there are no new concerning spots showing up. Also, next Tuesday I’ll be going in for the third immunotherapy treatment, so if not before then, I’ll at least make sure to post a more timely update for you after that appointment.

Health Update, Life Update

Doctor Visit, Happy, Hopeful, Optimistic
A Little Something to Make You Smile

Ben

November 5th, 2023

Well, thankfully both my dad and I are feeling better at the moment. So since there’s not much else to say right now, why not try a little humor? 🙂 My wife shared these mixed up quotes with me the other day and they made me laugh. Hopefully, they’ll have the same effect on you!

Just to warn you ahead of time, the following may fall flat if you’ve not seen the movie “The Princess Bride” or the Star Wars movies.

Luke Skywalker: “Hello. My name is Luke Skywalker. You killed my father. Prepare to die.”

Bobba Fett: “Never go up against a Mandalorian when death is on the line!” (immediately falls into Sarlacc pit)

Westley: “Wampas Of Unusual Size? I don’t think they exist.”

Miracle Max: “Bye, boys! Have fun storming the Death Star!”

Vizzini: “Do you want me to send you back to where you were? Unemployed, on Hoth?”

Miracle Max: “It just so happens that Obi-Wan here is only mostly dead.”

Han: “Why can’t I see?”
Fezzik: “You’ve been mostly frozen all day.”

Han: “I could give you my word as a Corellian…”
Westley: “No good. I’ve known to many Corellians.”

Han: “Give us the access code.”
Yellin: “What access code?”
Han: “Chewie, tear his arms off.”
Yellin: “Ohh you mean this access code!”

Buttercup: “Why do you wear that black mask? Were you burned on Mustafar, or something like that?”
Anakin: “Oh no, it’s just that they’re terribly comfortable. I think everyone will be wearing them in the future.”

Peter Falk: “Luke doesn’t get eaten by the rancor at this time.”
Fred Savage: “What?”
Peter Falk: “The rancor doesn’t get him. I’m explaining to you because you look nervous.”

Peter Falk: “That day, she was amazed to discover that when he was saying “I know,” what he meant was, “I love you.”

The Impressive Clergyman: “The Fowce is waat bwings us togevver today. It suwwounds us, and penetwates us. It binds the gawaxy togevver.”
original source unknown

Life Update

Happy
Symptoms and Hospital Visits

Ben

November 1st, 2023

Today I definitely came down with some of the side effects of yesterday’s injection. I had a pretty good fever and headache combination going for awhile, but with approval from the doctor I was able to bring it back down by taking a dose of Tylenol. I’ve also developed a mild cough and some muscle aches, but all in all I’m still feeling pretty good.

I was at the hospital for a little while tonight, not for me this time, but to visit my dad. He’s dealing with serious congestive heart failure right now and I honestly don’t know for sure just how bad it is. I do know that he has or at least did have a lot of fluids built up and they were trying to remove that excess. He also had a low blood oxygen level when they took him in, but by the time I left this evening, they had gotten his oxygen level back up into the mid-nineties where it is supposed to be. If you don’t mind, please keep my parents in your thoughts and prayers.

Health Update, Life Update

Sad
First Immunotherapy Treatment

Ben

October 31st, 2023

Today was my first immunotherapy treatment/injection, so early this morning we headed out on a road adventure to the hospital so I could get stabbed in the arm a few times! 😀

Everything seems to have gone pretty well and stayed on schedule as far as I can tell. They took some blood samples to make sure they new what things looked like before the injection. After a bit of a wait, they brought me to a small room, hooked me up to an IV, and got the medicine into me over a period of about 30 minutes.

This evening’s plan for the kids? Trick-or-Treating of course! I hope everyone has a good and safe evening whether you are participating in the candy gathering fun or not.

Health Update

Doctor Visit, Optimistic
Replacing the Wrecked Car

Ben

October 22nd, 2023

I have been doing a lot of research on vehicles to replace the Impala we lost in the wreck last month. We wanted to make sure we chose a replacement car that, like the Impala, had enough seats (and belts) to fit the whole family. It also should last us for a long time and be cheap enough that buying it wouldn’t leave us with a monthly car payment. We found one last week that seemed to fit our requirements, but was located a bit too far away to visit before the dealer closed up for the weekend.

So, yesterday we hopped in the van for a quick trip to Nashville, TN and came back with a new (used) vehicle. We ended up with a single owner, 110k miles, 2014 Toyota Camry in good condition that meets all our requirements. The interior and exterior are also in good condition, which is not really that important, but it does help make it feel like a better deal. 🙂 My immunotherapy treatments are scheduled every three weeks for the next year, and that’s a lot of long distance driving. So, my hope is that this new car will be a reliable mode of transportation for all those trips I’m about to start making.

Just for the fun of it, we also stopped at The Parthenon in Centennial Park before heading home. It is a full-scale replica of the Parthenon in Athens. They didn’t use the same building materials but it’s pretty neat to see an approximation of what the real thing might have looked like long ago. It is impressively large when standing next to it. The pictures, drawings, and photos of ruins I’ve seen in history books don’t really give you a good impression of the scale. Inside, they’ve also put a “best guess” recreation of the statue of the goddess Athena that was supposed to have stood there. It is a very imposing statue when you are standing right under it, as it stands about 42ft tall! The other thing I found impressive there were the doors. Each door is seven-and-a-half tons of metal, 1 foot thick, and 24 feet tall! But, due to the way they are mounted, the doors are very easy for just one person to move!

Athena statue

Parthenon doors

Life Update

Happy, Hopeful
A Referral and Second Opinion

Ben

October 10th, 2023

Sorry for the long wait between posts, but there hasn’t been much to tell. Today we traveled to a nearby city to see the specialized oncologist my local oncologist had referred me to a few weeks ago. The visit was good, but turned out to be a bit long. I was examined by this new oncologist and they confirmed for me that my PET/CT scan results were indeed clear and that immunotherapy is the treatment they want to pursue now.

The other treatment options (further lymph node removal and radiation) my local oncologist had mentioned during that last visit are apparently “older” options and don’t actually work very well on melanoma. I was told neither option would bring my recurrence chances down more than about five percent. This new oncologist said that they don’t like to use those treatment options anymore, except in very specific situations where the immunotherapy is not possible. They also explained that the “treatment” the oncologists have been talking to me about is not a treatment for any cancer I may currently have, they did confirm I’m currently clean, but it is done more as a preventative measure to help lower the chances of recurrence. Currently they said that considering the 3b (IIIB) staging, the chance of recurrence sits around 62%, but the immunotherapy treatment should cut that down to about 30-35%.

After he was done with his part, the oncologist we originally came to see referred us to a hematologist he works with on the same floor, who then gave us some more detailed information about my treatment situation and was able to answer our questions without leaving us confused this time. 🙂 Today we were impressed enough with the doctors we spoke to, and their staff, that we have decided we want to transfer my ongoing care and preventative treatments to them rather than continue with my local oncologist. They really seem to have it together at this facility. They examined me, gave us a lot of detailed information, got me registered as a new patient and gave us a treatment plan and scheduled me for follow up visits all within the span of just a few hours. It did take longer than we had initially planned, but both Michelle and myself feel much better about this arrangement.

I am scheduled to return in a few weeks to start getting the immunotherapy medicine, which is apparently a going to be administered though an IV, and we were told it only takes between 30 and 60 minutes to complete the treatment each time I come in. I’ll be returning every three weeks for the next year to get the medicine infusions and I’ll also be returning every three months for follow up scans to keep an eye on any possible signs of recurrence.

The medicine is unfortunately quite expensive so they helped us apply for financial aid today in order to lessen that cost (how much it is lessened depends on the response to the application.) They told us this medicine is $9,000.00 per infusion, which will get very expensive very fast if I’m supposed to be going in every three weeks with no financial aid or insurance to cut that cost down. Open enrollment for insurance is coming up soon, so I’ll be trying again to get insurance on November 1^st in order get that health insurance coverage as soon as possible! Hopefully, once I do get insurance, I’ll only have to pay full price for the services rendered and medicine that has been administered prior to January 1, 2024.

Health Update

Doctor Visit, Happy, Optimistic