Living With A Brain Tumor

Thursday marked day 154. This is the number of days we have lived in fear of not knowing what fate would hold for Scott and our family. When I think back about how this all started, I am reminded that none of us knows what lies ahead. We can guess, plan, prepare and hope…and that’s about it. The rest is not up to us, really. 

We started the day STRESSED. Edgy doesn’t even begin to describe it. I was snippy, not very pleasant or polite. It was as if all the etiquette I have inside drained out and in its place was pure nastiness. I couldn’t help it and either could Scott. A few unkind exchanges and one door slam later, we took a few moments a part.  

As I was dabbing on as much water proof mascara as I possibly could, without being mistaken for Tammy Faye, I turned to see Scott coming in with his arms outstretched and that, “please forgive me” look I have come to know and love so much. I fell into his arms and whispered in his ear, “I’m so sorry, babe.” Tears filled my eyes and luckily for all the waterproofing, I didn’t have any streaks to fix. We kissed and made up. Not that there was really any making up to do. We both completely understood what was happening and why. 

Once we got our bearings, we put ourselves in the car and began the drive to Aurora, just outside of Denver. The same long dreadful drive we have made 4 times now. It’s at least a 5 hour round trip deal. It takes on average an hour and half to get there, if there is no absolutely no traffic. If there is traffic, we can expect to add at least an hour to our time. All our emotions were still raw and all welled up on the surface. The sick pit we both had in our stomachs lasted all the way there. 

The walk into the hospital is the same every time.  We see people, who are visibly sick with cancer, walking to and from chemo or radiation treatments. Not many truly happy faces come through the doors as we are going in. It is a painful and real reminder of what we might have to look forward too. It’s easier to look down at the floor than to make eye contact with anyone. I don’t want to have the same, “I’m so sorry” look on my face as we have seen from everyone we know. It’s not that we don’t want people to care, not at all. It’s just that now we know what it feels like to have people not know what to say, or how to treat us because for most everyone, this is beyond the scope of their experience and it's just awkward for everyone.

We have no expectations going in. We know the news can be good, bad, or totally indifferent. We are here for some concrete understanding of how to move forward. We arrived 45 minutes early. Who does that? Doctors are rarely on time for their appointments, right? So getting there early makes it all the more difficult to wait for them to call us back. What were we thinking?  Traffic…we hit none on the way down.We can’t eat before, so that was out. The only thing we could really do was make our way up to the fourth floor, check in, and wait. 

All of five minutes we waited in the lobby and they called Scott back. A full  30 minutes early, an assistant escorted us back to see the doctor.  EARLY, at a neurosurgeon’s office, I was in complete shock. When the doctor came in, we were ready for the worst. We both had prepared to hear we needed to plan on a surgery. Knowing our time line would be limited, because we only have benefits until the 31^st of July, we had been bracing ourselves for several weeks now.

As the doctor performed all the initial tests of reflexes, strength, hand eye coordination, vision, hearing, and speech, he said everything looked fine. All responses were absolutely normal.  It was no surprise. Scott has been relatively symptom free except for the occasional headache, not sleeping some nights, 3 seizures, and the short term memory issues to be expected according to everything we have been told and read. 

 

We looked at several MRI’s on the computer screen along with Dr. Lillehei. He showed us again, all the first images and compared them with one another. Then he pulled up the latest image. He showed us the “area of concern” and explained what he was looking at. There is still something there, but it wasn’t clear to us what it was.

The first time we were shown an MRI image of Scott’s brain, we could clearly see an outline of “something.” There was a very distinct shape. It looked like a tumor. The image we were looking at on Thursday was a blurry fog, with no distinct outline or shape. Honestly, if we weren’t being told it was an area of concern, I wouldn’t have thought much of it at all. 

After a few minutes, the doctor said, “Well, it has not changed, increased or decreased in size since the last MRI. So as long as you have no problematic symptoms, and the medication is controlling seizures, there is no reason to do anything at this time.” 

Okay…so what IS it??? I looked the doctor right in the eye and asked, “What do you think this is then?” The doctor replied, “If it were a virus, I would expect the area of concern to move locations, change in some way, or disappear altogether. I am fairly certain, that this is some kind of low grade glioma. It doesn’t appear to be too aggressive, but we won’t know exactly what we are dealing with unless we can get a chunk of it and test it.” 

“Well, if you are going in for a chunk, can’t you just take the whole thing and be done with it?” Scott asked. 

No. It’s not that simple. They can take part of it, but never will they be able to take it all because of the location. It’s the left temporal lobe, where speech is controlled. If they take all the brain tissue that appears to be affected, Scott could possibly lose all ability to speak. The doctor explained that the way the seizures affect his speech when he has them, is most likely how he would be left, if they took too much of the left temporal lobe. If it were on the right side, they could literally take it all. But it isn’t, so they can’t. 

So, here’s where we are. Scott probably has a low grade brain tumor that isn’t rapidly growing. At this point, it doesn’t appear to be life threatening. He wants to leave it alone, rather than risk exposure and making it worse, or risking something unexpected happen during surgery, or needless cancer treatments that “may or may not have positive results on eradicating the tumor.” His doctor is fine with this conservative approach, as long as he remains healthy.

We are going to live with it the way it is, for now. The doctor feels confident Scott can return to work with several restrictions. We will monitor with MRI every three months and go from there. If anything changes Scott will decide at that time what the best course of action will be. We want to be conservative with everything. He could have had this for a really long time, and the only reason we know it now is that he had those seizures. 

If that’s the case and it doesn't continue to grow... then there's nothing to really worry about. As Scott would say, "It's just a marble in my head, no big deal."  I say it's a pearl of great price, from which we have gained experience and knowledge. After all, the reason we are here is to learn whatever we can from the experiences we have.

Oh…. The lessons this thing is teaching us. I can only hope we are learning them well and becoming better for it.  This hunter of mine was worried he wouldn't get to hunt this year. He sure will. My hope now rests on the foundation of the relationship we have built. Through trial, error, and more trial with success, we keep building, and removing, and building up again, finding glimpses along the way of the kind of life we ultimately want to live. 

It is all about finding ways of truly living, even when we think we're dying. 

I hope this message is loud and clear.