The Visit We've Been Waiting For...

On September 12th, I headed up north for my next set of scans and my first infusion that wasn't the combination of drugs. We were really glad that I was able to get through all four of the combo infusions. It sounds to me like not a whole lot of people are able to get through all four of them. We figure that me being able to do that was better for my immune system and the overall battle.

However, there had been some side effects that weren't the greatest... The most concerning side effect is the vision issue in my left eye. The day after my last infusion (August 22nd) I noticed a line going across the middle of my left eye. I went into the eye doctor and, fortunately, my actual eye looked healthy. That was a relief. That likely meant there was an issue being created by inflammation somewhere. Over the course of the next several days, the vision deteriorated. The bottom half of my eye developed this sort of grey blurriness and it made my overall vision a little weird. I was still able to see, but it was just weird.

The next side effect that kicked in was diarrhea (Sorry for the openness!). The biggest concern with these immunotherapy drugs is colitis. Basically, the colon gets really inflamed and it can lead to some serious issues if it's not dealt with in a timely manner. So the rule is that if you have diarrhea four times within a 24 hour period that it's time to get checked. Well the middle of the week after my infusion I had diarrhea four times in the span of a few hours and had to provide a stool sample... Always fun! Fortunately, test results came back negative for colitis. However, there were elevated levels of inflammation in my colon. As a result of both the inflammation in my colon and my vision issue, I was placed back on the steroid dexamethasone. After that, my vision has improved, but is not back to 100% yet. I have the faintest of lines across the middle of my left eye still. I am, however, able to read out of just my left eye. So while it's there, it isn't really inhibiting anything.

One quick note about the steroid... It helps a lot with some of these issues, but it has its side effects. The most noticeable is swelling. My knees, ankles, stomach, and face have all seen swelling. I've hated it! haha

So back to September 12th...

I had my CT Scan and MRI done at the South Jordan hospital. The guy running the CT scan has done one other CT scan of mine. He's REALLY slow once I'm in the machine. The two scans he has administered have by far been the two longest. Fortunately, they aren't too long in general, but instead of just a quick 5 minute scan it turns into a 15-20 minute scan. He also struggled to get my IV in. He went fishing twice in my left forearm and wasn't able to get it started. The nurses at Huntsman can get it in that same spot without me even feeling anything! Anyway, he ended up calling in another lady who got it in my right elbow without much issue, other than it was an uncomfortable IV the rest of the day and was sore for a few days after. I much prefer the nurses at Huntsman haha

So after my CT scan and MRI, I headed up to Huntsman for some lab work and a visit with my PA before my infusion that afternoon. This is where things get exciting...

My parents and I were in the exam room waiting for Carolyn (the PA...) to come in and let us know where we were at with the scans. The last several set of scans had all been progressively worse, I guess you could say. We'd seen new tumors pop up in my brain as well as existing tumors grow in size. The scans from August 22nd had also shown some tumors in my chest cavity getting bigger. From the standpoint of getting approval for targeted radiation in my brain, that wasn't good news. We need the tumors in my body to shrink or stay the same so that we can show stabilization. My biggest hope with these scans was that everything in my body was stable and we could reapply for approval of targeted radiation on my brain. That was the hope...

So Carolyn comes into the room and the first thing she says is "I have some amazing images to show you guys!" Well, naturally, we were anxious to know what's going on. She goes over to sit down and she starts crying. She's crying! So mom and dad start crying too! haha We still don't even know what's going on. So I'm thinking that tumors in my body have shrunk, but then Carolyn says that it's the images of the brain that she can't wait to show us. Before she goes over them, I get Kim on FaceTime so she can be a part of the reveal. I think Kim knew that it was good at that point, otherwise she wouldn't be on FaceTime...

Carolyn gets the images of my brain pulled up. She has the image from August 22nd on the left and the one from September 12th on the right. She scrolls up to the first tumor from the 22nd and then scrolls up on the image from the 12th AND... The tumor is gone. She scrolls up to the next tumor on the 22nd and then scrolls up on the image from the 12th AND... The tumor is gone. Gone! Over and over and over again this happens. Tumor after tumor is GONE! Let's just say lots of tears were flowing! haha I believe that I had about 16 tumors in my brain. Of those, I think 12 of them disappeared. The remaining four all shrunk and three of them were really small.

This is what I would call a miracle! In the span of three weeks there was improvement in my brain that I never would have expected. I think that in situations like this you hope for incremental improvements. Those small victories that show you things are working. This, however, was on a completely different level. And we couldn't be happier! It is such a relief to know that so many of those tumors are no longer in my brain! The other bit of good news is that none of the existing tumors in my body grew in size. There were also no new tumors in the rest of my body. In fact, the tumor in my lung disappeared and several of the tumors shrunk in size. The visit really couldn't have gone any better! This was such a huge blessing from the Lord and another testament to His power. Obviously, I'm not out of the woods yet. I still have tumors in my brain and in my body. But this was a huge victory in the overall battle that I'm entrenched in. A huge mental and emotional boost for me, too!

So after celebrating this fantastic news, we moved on to discussing what happens moving forward. Carolyn stepped out to jump on the phone with my new oncologist, Dr. Hu, to discuss the plan of attack. Because of my symptoms from the steroid and because of the results of the scans, they have begun tapering me off of the steroid. That tapering will take place over the course of three weeks. I've also been put on an antibiotic for pneumonia. Apparently, I am at a higher risk of developing pneumonia due to the prolonged time I have been on the steroid. So that is just a precaution. I was supposed to have an infusion that afternoon, but it was decided that shouldn't happen. My body is doing what it's supposed to be doing. It's killing the cancer. Continuing the infusions could introduce complications that wouldn't be good...colitis being the big one. In order to minimize the chance of something negative happening, infusions have temporarily been stopped. I have an infusion scheduled for October 8th in the event my oncologist decides to start them up again. However, I will for sure have an infusion that day to receive the bone regrowth drug for my arm. That is supposed to happen every three months and the last time I received it was July 11th. So that will happen. It's just unknown if the immunotherapy drug will be administered that day. I won't know that until I sit down with my oncologist earlier in the day. As far as scans go, the next set of scans is scheduled for 3 months from now. They feel comfortable enough pushing those out that far, which is great!

So that's where we are at! About as good of a visit as we could have had with significant improvements in the overall cancer issue and then no more infusions for the foreseeable future. All in all a good day! The hope now is that getting off the immunotherapy drugs will help my vision fully clear up...

The only hiccup of the day came as I was driving home... My IV had been left in after scans and blood draws so that it was readily available during my infusion. In all of the excitement, we forgot to take it out! haha I realized that driving down I-215. After shopping at Costco in Spanish Fork I determined to remove it myself. Certainly never done that before, but it wasn't bad. Easy peasy pulling that out!


To celebrate the exciting news that night we had a pizza party with the family. Main Street pizza from Manti is oh so good! And pizza is ALWAYS my go to for celebrations! Such a great day!




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