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.

 

16 Years and Counting!

Today is our 16th  wedding anniversary. Scott bought me 16 beautiful red roses and a card with the words, "Love Note" in the title, and a balloon that says I love you. Such a sweet gesture! We are still here, still waiting, and still hopeful. This anniversary is different for me in many ways than years before. We usually take turns planning events for each other. You would think we would be especially mindful of the this one, since we have been through so much this year.

Turns out, it could have been just another day. There is not much hoopla around here, aside from the love bouquet.  Not because we don't want there to be, but because it is just plain hard to find reasons to celebrate in that way, being so exhausted from the stress that comes from daily living with this unknown and illness. I don't mean to sound ungrateful or disconnected, but I do think this year it would be really great if we both just had a day off from all of this. That would really be a reason to celebrate!

The anniversary itself is wonderful. We have made it this far, still in love, still want to live together, and still discovering new things about each other and about this life we live. I used to think up all sorts of extravagant ideas, to show my love. These days, my extravagance is more about just showing up and being present in the here and now, no matter how difficult it is. The extraordinary part of it all is how much I really just want to get in my car and drive away from it all and I don't. I'm here for the long haul.  I get that people want me to celebrate. It's important. I just want a minute to breathe, and not have to worry about what is coming next. But alas, that is not to be just yet.

So instead, I am grateful for the relationship we have, and the love we share. I'm glad we've made it to 16 years in an age when it's totally acceptable to divorce because things get hard or even when things stop being hard and just get boring, or when people change, or don't.  I am proud of the fact our children know how much we love each other, even when they have seen us argue and fall apart. They also get to see us kiss and make up, compromise, and start again.

We are living a real life and I am proud of that. It's hard and messy and imperfect. It's sad at times, and lonely and, beautiful and fun, and, and, and....our children get to experience it all and know what to expect when it's their turn. It's not a fantasy. It's not all good and it's not all bad. It's mostly satisfying, with bits that aren't. My hope is that they will know just how hard it is, what it takes to make it work and will be better prepared to make the necessary commitments to have the same enduring love that we do, with all the parts and pieces that make it unique. 

Being married to Scott is one of the greatest gifts and joys of my life. I am so happy to have made it to today with him. I wanted to forget about it and pretend it wasn't here already. It would have been easier in some ways to go about my business and not have to think about the anniversary of June 12, 1998, the day we eloped to Reno and got married at the Candle Light Wedding Chapel. I didn't want to be reminded of when it was so easy to just be happy, because it takes a lot more effort now. That day was our first and only limo ride. We took it to the court house to get our marriage certificate, because it was included in the package.

We got this one teeny polaroid picture ( I can't believe they still had those then!) and we were official. When I think about that day, I am still filled with hope, love, and certainty. There were no cold feet for either one of us. We knew it was meant to be. There was and still are absolutely no doubts. There is, however,  some sadness for just how hard things would turn out to be.

When I think back to how we met, it still makes me laugh. Not many men would go to the mall with his soon to be girlfriend and her best friend, knowing full well the bestie was only there to check him out and okay him to continue or not. Scott was totally up for anything. He was easy to talk to, easy to listen to, and easy to look at. He was just plain easy going. It was easy to be with him, because it felt like we knew each other already. He knew my heart, and knew what I wanted, without me ever having to say it first.

I find all of these things a bit harder to remember today. Not because I love him any less, but because I am still so scared I will loose him. I don't want to miss anything, and yet I am exhausted from trying to keep up with everything.  I am edgy and easily annoyed. I don't want to listen, or talk, or even look because I know it could all be different tomorrow.  5 months ago, those thoughts never entered my mind. I want to scream. I want to hold onto those days when things were just so easy and more care free and I was certain I would hold him forever. 

This anniversary has reminded me of the things I will probably never have again, in the ways I had them before. I was angry when this thought first hit me and that's why it was hard to think about celebrating this day at all.  It seemed a bitterer reminder of all I have lost. But in the moments I had to just sit and be with myself today, I remembered that although things are different, and won't ever be the same...it doesn't mean they are bad. Although I may not know how much time I have with him, none of us ever do.This isn't something to be bitter about. It's something I can accept as real life and don't let it get in the way of living.

I have a man who loves me, and I love him dearly. We have a family worth every bit of sacrifice we have made to get here. I don't know who or what I would be without these relationships, just the way they are, especially this man of mine. He has loved me in ways I could have never imagined possible. I am able to truly say, I'm so blessed to be with him today. I'm so happy for this whole experience of being Scott's wife and the mother of his children. 

Today and everyday is a celebration because we have each other. Whether that is for one more day, or 40 more years, each new day is a chance to experience whatever this  life has to offer and become better people for it. 

Happy 16th Anniversary to us! May we continue to be blessed with many, many more.

The Longest 8 Weeks Ever...Just Got Longer.

Today we were scheduled to see Dr. Lillihei at the University of Colorado for another consultation. Scott had another MRI done Friday. This makes number 4. Since the prior surgery was cancelled, and new information has come to light, we opted to "wait and see." We were hoping we would have more answers and plan of action today. But the appointment was cancelled and we haven't been able to reschedule yet.

The result of waiting to see, has been for lack of better term, excruciating. We have lived with this unknown for months now. I have learned to put things aside, for the first time in my life. I've said before, patience is not one of my virtues. However, I can now undoubtedly testify that with enough stress, time, and no other options, one can most assuredly acquire this sacred virtue. Patience, is something I believe we are conditioned to have more or less of, depending on the circumstances placed in our path.

Scott has had the patience of a Saint, from the moment I met him. He has a quiet way with me and with our children that is not obvious, and often goes unnoticed. For almost 16 years, I took this virtue of his somewhat for granted. It is not something that always stands out to me, because this is the way I have always known him. What has always stood out, is his uncanny ability to put things aside. Sometimes, this is a blessing and a lesson to me. Other times, I have been annoyed by his way. It can come across as aloof, or uncaring. I know better now.

Since Scott has been at home for more than 4 months now, I have begun to recognize there  things I can no longer afford to take for granted simply because they have always been. It seems such a tragic thing to admit, that I have had the most patient and forgiving husband, who has always shown more patience than he gets. I think I have had to endure this trial, in part, to understand the value of the small things I take for granted and that have even annoyed me at times.

This trial for Scott has been extremely challenging. It has challenged his beliefs about who he is, or thought he was to himself and to us. It has brought up many barriers that he never thought he would have to think about how to overcome. Scott has been very, very patient through it all. At first, I thought it was that he didn't understand. I know he understands. He chooses to keep things to himself, not because he wants to be distant, but because he doesn't want to burden any of us with his inner turmoil.

When I have a bad day, he just knows I am having bad day and never makes me feel like I should not have it. He rarely gets angry. He always says, "I love you." Scott lives with this thing inside his head that has changed many things in our lives. But the one constant, is his ability to wait it out and not let the outside world know he is in turmoil. I admire his strength, his courage, and his grace under pressure of this magnitude.

I know this is what makes him such a great hunter. He could sit for hours if he had to. Still and quiet, deliberate in his movements and actions. This translates to every other part of his life. He doesn't make hasty decisions. He takes his time and waits things out. He says very little, keeping anything that will scare off the prey, to himself, unless absolutely necessary. He must, in the moment, without hesitation decide when and where to aim, and must hold hold steady for as long as it takes for the "kill shot" to come into his view.

I have learned a great deal from this man. I will never be able to fully articulate the things he has taught me without saying a word. I have learned, through all of this, that we can stand our ground and wait it out, with patience and kindness towards each other, or, we can be angry, hostile and stressed out completely. I've tried both ways. Frankly, I much prefer the calm peace which comes from just waiting to see what comes up next and dealing with things as they happen. It's a way of living with the "what is" instead of the "what if."

Acceptance and patience seem to go hand in hand. I can't say I have fully accepted what this is, because we really don't know yet. Knowing there might have been more answers today, gave me hope to continue to be patient with ourselves, each other and our children, as well all of you who are supporting us in your own ways though this hard time.

The hunt continues.... we will patiently wait for another appointment with the doctor for answers that will bring us closer to knowing what to do and how to do it. We know it won't be easy, whatever it is. This is where not only patience, but hope comes in.