I know it has been a while since our last blog entry though I didn’t realize it was almost 3 months ago! There’s always something to write about but, to be honest, it can be hard to focus on putting something together that isn’t a bunch of jibber jab.

First, I am doing well. Really well. Being able to walk without a brace for the past 10 weeks has done nothing but improve my energy level and overall mental positivity. This is called "normalcy". Oh, walking around with the brace got me a lot of attention as it is a fairly unique device but, on the downside, it gave me attention sometimes when I didn’t want it. "What did you do to your leg?" That was a very tough question and there were many instances where I just wasn’t in the mood to answer. "I fractured it." Not a lie and it ended the conversation most of the times. Kim was great at running deflection for me if we were out and about together. If it was someone I kind of knew asking, I would tell them if you want the long, drawn out sob story, go out to Facebook or my blog. It was much easier. I’ve added over a 100 new Facebook friends since the start of this journey and every one of my you has had a part in providing hope and comfort to us. Thank you all so much!!

To say this has been a roller coaster ride probably isn’t accurate. Personally, I love roller coasters! What I hate are those amusement park rides that spin. Ugh. They all make me nauseous. Let’s say the past few months has been a "tea cup" ride. Your head just spins while you are riding and then when you step off your stomach is a mess (I call this chemo gut). It doesn’t last long and I’ve learned to live with it. My biggest complaint lately has been eating. I’ve put on 10-15 pounds since I started on the clinical trial which is great! The team tracks this as it is just one of many indicators of your overall health on this study. I’m probably the only one that has put on this much weight so, trust me, I am not having problems eating enough. The issue is finding what to eat that actually tastes somewhat good and doesn’t leave a horrible after taste. Folks that I have talked to that have gone through chemo regimens have told me about this. I blew it off...kind of...as I was 6 months into treatments and had mostly no problems finding something that would satisfy my tastebuds. Oh, how naive I was.

So, I had to revamp my diet to include things that I would not eat if it wasn’t considered healthy or beneficial to helping my condition. I have determined that eating something, anything, is helpful and I just have to go with it. I still won’t eat dessert-type junk food but I will eat some frozen yogurt as it seems to replenish my taste buds or at least get some of the bad taste out of my mouth. I went through a couple spells of munching on cheese pizzas from Ledo’s. That phase is gone. Perhaps it will come around again. 😋 But that’s essentially what happens. Something tastes good for a little while and then it’s over. I started eating pasta dishes a few months ago and had to stop. This week I started eating it again but I think the relationship is on hiatus again now that I had it a few times. My saving grace has been oatmeal and cereal. I can usually always eat it and I buy it by the case via Amazon. The healthy stuff, of course. I do add cinnamon, raisins and blueberries to it for flavor. That’s kind of been the key to it all: flavor. I was doing hot sauce on a lot of stuff because nothing had any taste. Guess what? Can’t do hot sauce much anymore. Doesn’t taste good. Sheesh. But, like I said, we are figuring it out each day. My weight is stable and, honestly, this has been my worst complaint lately which isn’t too bad.

Getting back to the issue at hand. The cancer. We have endured (3) 9-week cycles of treatments and are now 6 weeks into cycle number 4. Essentially, it has been over 7 months of treatment with a total of 21 infusions so far. Should have been 22 but I missed one in June due to illness. We can’t believe it has been that many! In a way, we are on cruise control. Yeah, there are sometimes I cringe having to go in and get it done. It’s a mental thing. I have a love/hate relationship with the Johns Hopkins Cancer Center. I love that it is there but hate that it has to be. The people are wonderful that I work with (technicians, PAs, doctors, nurses, etc.) but if you ask them about their job, they will say they wish they were unemployed because then the place was no longer needed. We are glad they are there. It takes very special people to do their jobs and we are blessed to be so close to such a wonderful medical community.

Roz and me at Hopkins

Overall, I am progressing well. My tumors are down 26% though, to be honest, I wish it was more but that’s probably just me. To recap, they measure 3 tumors (2 in my lymph nodes and 1 in my pancreas). The one in my leg is too difficult to measure as it is "globular". Radiation treatments made measuring it even more difficult so we just kind of ignore that area in terms of numbers. We are going to get a CT done next month and meet with our radiologist to see how the leg is doing. Hey, I’m walking and there is really no pain, just some occasional tightness in that area. The measurements of the 2 lymph nodes are getting close to 5mm. Once this happens they will no longer measure them as they are too small and they believe they are no longer cancerous at thoat point. Kim, if you remember, has a PhD in Google Medical and has confirmed this in other studies. Dr. Laheru talked about this after the last CT scan. So the focus is on the main tumor in the pancreas. I really need to give it an evil villain name. Something from a Marvel or DC comic book. This tumor is down to 24mm which is just under an inch for you non-metric types. It’s getting smaller but it’s the slowest to respond which makes sense since it’s the leader and the strongest. For now, they are going to keep blasting at it with the 5 chemo medicines. As long as I am doing well, they will continue me on this program. Kim has been researching other treatments to keep in our back pocket just in case this treatment stalls or if there is something more promising. But her research has shown that this type of treatment, metronomic chemotherapy, is the best treatment option going these days for this cancer as it is being done in places all over the country.

UPDATE ON THE NUMBER!

Now, for some really good news. My tumor marker. It keeps dropping and is now in double-digital land! 87! It's now done to 64 this week (10/20)! Another recap. They run a blood test (one of many) that determines how much of the cancer carbohydrate antigen is in the blood (simply put). It’s called a CA 19-9. The normal range is 0-37. My baseline number was 212 and it went even higher after radiation which was normal. But it has steadily dropped since last May. Every now and then it might go up 10 points or so (see graph) but we have learned to ignore those blips...somewhat. But the fact that this number has dropped so much is a very promising sign of the cancer getting weaker. Thank God!

I cringe every time I get an email that there is a "new test result" from Hopkins. Yeah, there’s an app for that. It’s called MyChart and it contains every iota of information that comes in. Very handy but very annoying. You can’t turn off the emails. There are sometimes when I don’t want to see test results (like after a scan) before we meet with our doctor. But you know it’s setting out there and it drives me bonkers. The CA 19-9 result is kind of like that but I do look at it right away. Otherwise it will drive me crazy. Kim tells me to ignore them. We are so different sometimes. 💕😂

Here’s some quick miscellaneous stuff. I had to go back to 2 shots of blood thinners a day. Had a bout of swelling in my ankle and foot last month and it was thought that perhaps the DVT was coming back. Did an ultrasound and didn’t see anything but better safe than sorry. What’s another shot? My white cell numbers have gone down the tubes and I am now taking another shot once a week to boost that number. I also get a shot every 4 weeks to help rebuild bone cells in my tibia. My stomach sometimes looks like a nebula image taken from the Hubble telescope. It’s kind of nice my mid-section is a little bigger these days. More room for shots! 😜

Over the past week, my magnesium level has plummeted which gave me a severe cramp/muscle pull in my left calf which is my tumor leg. It hasn’t gone away after a week. Got another ultrasound done just to be safe that it wasn’t a blood clot. Veins and arteries look great so it’s probably muscular. I am now on a magnesium RX and limited movement to try and get this taken care of. "It’s always something." (TM)

We’ve met some really wonderful people going through either the same treatment or being treated for another GI type of cancer. Marie, Fagan, Norm, Lilly, Irma, Wes, and others. Marie and I talked in the hallway with our IV racks at the last treatment for almost an hour. It was driving the nurses crazy every time our timer bells went off when a chemo bag would go empty. You search for positives each day as a way of coping and meeting people is definitely on top of the list.

I know this was a long blog entry. Thanks so much for all of the love and support. Our journey is less burdened because of our wonderful friends and family. God Bless! 💕❤️

Love,

Kevin and Kim