A Curve in the Road

Imagine driving down the road, perhaps daydreaming a bit because life is good, when...whoa...a sharp curve! You weren't expecting it so you slam on the brakes, adjust, re-evaluate, but slowly continue on.  That was us on December 6. Other times, you're cruising along, but you've been on this road before and have some experience so the curve, not so sharp this time, just slows you down and leads you in another direction.

Today, MRI day, gave us another curve to deal with. However, based on what we've learned from the past, we were expecting it.

Last weekend, Kevin was having stability issues when walking so he decided to start using a cane. Trying to depend on having something around for steadiness (like a wall or piece of furniture) wasn't realistic so the cane was a great idea.  Thankfully, Kevin's mom had a couple in storage he could test drive.

This week has been a bit trying on the home front for both Kevin and I.  He struggles.  I want to help. What can I do to save him steps or time or effort?  Unfortunately, my "helpfulness" crossed the line into "you don't think I can do anything." Conflict. It's so hard to have people do things for you (Kevin) but it's so hard to watch people struggle when they don't have to (me). Clearly I need to back off.

This morning Kevin and I made the trip to Rochester.  We were lucky enough to have a quick visit with good friends on the way over which brightened our morning.  Luck was on our side again for parking.  As we waited for the elevator in the parking ramp, I did reflect on how Kevin's mobility has changed each trip we make.  When we started, we took the stairs, just to get some exercise. Today Kevin had his cane and stairs would not have been a viable option.

After coming out of labs (a quick blood draw) and using the restroom, Kevin said he needed to sit down.  He said, "I feel a little light headed.  I think I'm going to need a wheel chair." Thankfully one of the ladies who checks in lab patients was willing to retrieve a wheel chair for us from one of the entrances.  The lightheadedness quickly passed. Personally, I was a little relieved we were using a wheel chair.  Even with the cane, and my holding his other hand/arm, Kevin would trip.  His left leg isn't working properly so his toe drops down and catches on the floor causing him to trip and lurch forward.  It gave my heart a jumpstart every time.  Using the wheel chair was a little easier on my ticker...although I'm not sure Kevin could say the same with me driving the wheelchair.

After the MRI, we set out to find lunch.  At one of the loading/unloading zones, Kev was getting out of the wheelchair so we could walk the block or so to get a sandwich.  One of the helpful attendants said, "You can take the wheel chair."  I wasn't sure about it. We looked at each other and decided a walk might be good.  As we made our way to the corner to cross at the light, I was inching Kevin closer to the curb.  He doesn't move real fast so we had to be ready.  A nice woman in scrubs said, "Do you need a wheel chair?" "No thanks, we're going to try walking."  I smiled and thought, "These people are so kind and considerate. How nice."  What I didn't realize until we sat down to eat was that Kevin had a yellow band on his wrist that said FALL RISK.  No wonder!!

Our appointment with the doctor was at 3:20 so the wait did not seem as eternal as last time.  Plus, Kevin was in a pretty good mood.  Not so uptight about the possible results.

Today we saw Dr. Sani Kizilbash.  Not sure why, but he was knowledgeable and nice so who are we to question.  He showed us a comparison of the last three scans (May, July and today).  Today we learned that not only do MRIs have several different angles, but several different views.  For example, we were aware of the Contrast and Flare images.  The injection into Kevin's IV help create these pictures.  However, we hadn't heard of Diffusion Weighted imaging or Perfusion images.

The contrast and flare pics didn't really look that much different from last time.  There was some increase in a dark area which he believed to be swelling.

As I had thought during our last appointment, Avastin (Kevin's current drug) makes swelling go down, but it can mask tumor growth.  In July, we were assured that the tumor looked better and that change wasn't being caused by the Avastin masking.  That diagnosis never sat quite right with me.  In my gut, it didn't make sense.  If his tumor was better, why weren't we seeing an improvement in symptoms?  However, the July diagnosis did bring Kevin peace of mind and hope which is extremely important.  The symptoms weren't getting any worse and I believe we could go and do more this summer because of Kevin's state of mind.

Perfusion images show blood flow in the brain. When just looking at blood flow, there appeared to be no change in the tumor.  But as Dr. Kizilbash explained, that is why it is important to gather as much information as possible.  The Diffusion Weighted imaging shows the density or solid area of the tumor.  Those pictures appear to show growth.  The Avastin is still working to control swelling but the tumor is still growing. The picture shows copies of the Diffusion Weighted imaging from May (left), July (center) and today (right).  The white area (tumor) is larger.

So now what?  Continue with the Avastin every two weeks.  Add another chemo drug called Lomustine.  This is a pill taken once every 6 weeks.  It is a stronger dose of chemo and is based on nitrogen mustard (chemical compounds similar to mustard gas...not exactly thrilling). With this drug, blood counts are taken weekly.  Generally blood counts tend to drop the first three weeks and then start coming back the next three (thus the six week interval). Of course, with any chemo, there are the possible side effects of nausea and fatigue.

An MRI is done along the same schedule, every six weeks, as the drug.  Ideally, they try to have patients get six treatments (thus 36 weeks) but patients generally only get four due to blood count issues. Today, the doctor called Kevin's blood tests "boring" which means they were good, nothing to talk about. He did recommend doubling the dexamethasone (steroid) from 3mg to 6mg to see if it would make a difference.  If Kevin didn't notice a difference within a few days, he is supposed to go back to 3mg.

We also discussed clinical trials.  There are still no trials at Mayo that Kevin qualifies for.  Dr. Kizilbash recommended we check with the Brain Tumor Network to help with research.

Although better news would have been preferable, we were ready for this curve in the road so Kevin (Mr. Positive) won't let it slow him.

Today we are thankful for:

• Beautiful sunny days and the opportunity to enjoy them
• Doctors who can share not so fun news but still laugh with us
• Drugs which give patients options and hope
• Continued research to find a cure
• Helpful and considerate strangers
• Caring friends and family who share their time and well wishes and prayers
• Experiences which help us learn and grow so we can handle those curves in the road

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  2 Corinthians 16-17