Honestly, I was hoping that there would be no more entries in this series. Or failing that, that there would be one far in the future. I did not expect that so soon after seeing a “remission” scan, where nothing was present, that we’d be back here.
As late as July, all looked well. Like we were clear for a while. This allowed us to take a much-needed trip down to Texas… yes, in the summer of all times. Not sure why we just can’t seem to plan to skip the hottest of months in Texas.
Fortunately, despite the heat, we were able to have some good visits with family – which was the primary reason for braving the heat. Well… that and the food.
Also in July, Laura completed her first official 5K event! We did not run but walked, and we had been regularly walking the 3+ miles a few times per week in “training”. This was good for both of us and on this trip to Texas, we were able to continue the good habit. However, to walk in Texas in summer, one must rise early if one wishes to not melt, and we were at it at 6:30AM central time – well before the sweltering heat of the day. Overall, I was happy that we were able to not only continue, but to do so under somewhat unpleasant conditions. After a two-week Texas venture, we returned home and continued our walks, just not in the morning. We did some 3.5 mile walks a few days per week as we continued the habit.
But… Then in late August, things started to change.
Small things at first, I noticed things like Laura struggling with the walks: getting tired earlier and tripping a little where she didn’t before. She started dropping things or losing track of items that were in her hands. Eventually, I noticed her left hand shaking. She also complained about feeling a little queasy sometimes, but we didn’t think it rose to the level of nausea.
I had a business trip scheduled for the first part of September, so I had her come along with me. It was not the easiest of trips: 2 days in Chicago, followed by 3 in DC. (For DC, I extended it one day to see our friends – and I’m so glad we did!) What I didn’t know when I set trip up was how hard it would be for Laura. On the first leg to Chicago, everything went fairly well. It’s just a short flight from Seattle and we got off the plane and went straight to the hotel to eat and rest. I did my work the next day, and we had some deep-dish pizza, which you HAVE to experience when in Chicago.
I don’t think we were able to finish this pizza, but we tried!
After this, we flew to DC (through Dulles airport) the next day. Fortunately, my co-workers who I accompanied had a very reasonable travel itinerary and there was no pressure for arriving or departing at a certain time. We took it easy the morning of travel.
However, transiting through O’Hare airport is always an ordeal, and Laura was struggling to walk through the airport – even when there were moving walkways. It took us longer to get to our gate, but the flight to DC was even shorter than the one to Chicago.
By this time, I was getting very concerned. I thought maybe I was pushing her too hard with all that walking earlier and that the trip was a mistake, but since we were already in route, there was nothing to do but carry on. This was Thursday.
That evening, after arrival, we had a lovely dinner with friends before retiring and trying to rest.
On Friday, my work was very short that day and I was able to have lunch with Laura at one of our old favorite spots in Herndon, VA. Then later, we were able to have dinner with another old friend. At this point, I was noticing even more severe balance issues and other symptoms that were concerning. I kept feeling like I was just expecting too much since the travel schedule was fairly aggressive and it’s not something we are used to.
On Saturday, we had two meals (lunch and dinner) with a few more of our good friends. This was also a very tiring day.
Sunday was our trip back, but before that, we were able to visit our old church and have an excellent lunch with old friends. Our flight out was that afternoon, so I had planned to be able to have a good lunch and then just go to the airport and fly home.
That day was very hard for Laura. At the church service, she seemed disoriented and very tired. At lunch, she began complaining about nausea, and even once when coming back to the table in a sparsely populated room at the restaurant, she could not even see us. I knew I had to get her back home safely, so I was glad that we were headed to the airport.
At the airport, she struggled a lot. Walking took a lot out of her and Dulles is not a small airport. We took the train to our terminal, but the walk had to have been at least a half a mile from the train to the gate. Maybe more. She had to sit down three times on the way to the gate. It was clear that she needed to rest and that something was wrong. We got home safely.
I knew she was tired and needed to rest, but I was still very concerned. I wanted her to rest at least a full day once we returned, so Monday was a long rest day for her. I thought I would see some improvement after rest, but I did not. So, I called the hospital. She had an MRI scheduled for October 15 or somewhere around that, but that was a month away. After I described what I was seeing, they agreed to move up the MRI and doctor visit to the first available spot on that next Monday.
On Monday, Sept 21, we went in early to get an MRI. Normally, we don’t like to do it early, but this was all that was available. So, there we were at the hospital early in the morning on Monday. After the scan, we hopped in the car and drove home. Almost before we got home, a somewhat scarry call came it. It was the imaging tech at the hospital. He said he had seen something that concerned him enough that he wanted us to go to the emergency room.
I did not really want to hear that. Neither of us did.
Back in the car we went and headed to the closest emergency room. There, they were instructed to give her some steroids, which they gave her through an IV, and then wrote her a prescription for steroid pills. The images they saw showed some major inflammation areas and bright “highlights” in the MRI.
The tumor was back and it was pushing on her brain.
At the doctor a couple of days later, he showed us what was there in the MRI and talked about treatment options. Seems that tumors “throw out” a lot of malformed blood vessels which can cause terrible swelling because they are “leaky” and not properly constructed. The treatment he wanted to put us on was something called Avastin, which is an infusion every two weeks. This supposed to stop the profusion of excessive blood vessels and thereby reduce the swelling.
He also told us that the tumor was inoperable this time because of its proximity to very sensitive areas, and that it was also pushing on her optical areas – which is why she had trouble noticing us at the restaurant that Sunday. She also has been discouraged from driving. I am now the official chauffeur. A job I enjoy.
Since this has cropped up, my management has been very supportive and has encouraged me to work from home as I need to. I am taking their advice.
She has now been on the Avastin treatment for almost 6 weeks, and the initial imaging is very promising.
Below are two different cross-sections. The left image is from September 21, and the right image is from November 2nd. What is important to see here is the compression of the ventricles and ridge detail on the left image. (Ventricles are the black blobs in the center). I tried to line up the images as best I could with the exact areas for comparison. Also, the images are mirrored from reality: the tumor is on the right.
The above shows both a great reduction in the pressure as well as a lessening in the highlighted areas – where either a tumor is or excess blood vessels are.
This one shows the inflamed area more greatly reduced as well.
The doctor was very pleased with the results. We are too.
The biggest downside here is that there are side effects from the steroid medication. So many negative side effects that we are glad the Avastin treatment is so effective. We began stepping down the dosage of the steroids a couple of weeks ago once the infusions began. Now that we’ve seen the results, we are tapering it down even more aggressively. Once that’s gone all the way, Laura should be able to have a much more restful sleep and the other annoying side effects should also subside.
Not going to talk about those here.
So, the end of this particular episode is hopeful. Even though the tumor came back, we are fighting it.
