One Year Surgiversary

January 19, 2015 has come and gone. So many things make it feel like a 100 years ago. Yet, moments come, and thoughts enter that take me instantly back there like it was yesterday. He could care less if anyone ever knew what we were experiencing. At first when I shared with him I was blogging about his brain cancer and my feelings about it, he said he didn't want me to. It made him uncomfortable to know people are reading anything about his life.

If for nothing else I blog about this, to remind me of the universal connections that bring us together whether tragic or joyful...in darkness or light.

Hope is what brings me back to writing this blog. There are times when things get so hard, the pressure so unbearable, and our weaknesses become so unavoidably obvious, that I throw my hands in the air and beg for this to be all over. "Take me now, I can't continue. What is the point?" It doesn't have to be cancer that brings us to the brink of self destruction! Many things in this life push our mortal being to the edge of security and sanity.

What stops us from giving in and giving up?

I've had more teary days and nights than I can count. I have done more second guessing than I care to readily admit. I like to think of myself as a good, caring, person, willing and able to help make a difference. But I get tired, emotional, and drained...I feel guilt for wishing we could go back to the way things were before cancer, even though I still had things I complained about then too. "Will I ever truly be happy with anything?"

I wonder...

I haven't had a perfect life. I don't believe any of us do. Although there are arguments for perfection out there, I think most of us struggle at one point or another to become who we truly are comfortable being. Scott and I have discussed this many times. This illness has brought about so many changes for both of us, its hard to imagine such rapid change being possible. I wonder why it has to happen so quickly?

What's around the corner if we are coming from this?

I rarely talk about the anger outside my close circle because it's uncomfortable. The grief. The deep, deep sorrow that comes from knowing the sickness is here, it's not going away, and my best friend who has it, is changed forever. It feels like I'm drowning in mourning some days, because Jan 19, 2015 the person I have worked to know live with and love, was still whole and we didn't have to try to remain connected.  We just were. Everyday since has been an exercise in mental and physical endurance to remain loyal, faithful and kind.

I don't openly share how difficult it is to wake up in the morning and go to work to take care of our family, all the while praying nothing comes apart while I'm gone. I've said, I am fortunate to have to work to escape to. I went through months of feeling guilty because I have my career and Scott doesn't anymore.  I willed myself out the door and then back again, because I knew once I left I would feel some sense of relief. Yet on my return, someone will be crying, unhappy, or yelling because emotionally, everything has changed and I'm not here to run interference so the guilt sets in.

I've been asked why I don't tell the whole truth when I write about this journey. And the truth is, unless you have to live with this kind if reconciliation, even if it's written about, you will trivialize it. You will judge the perception. You will say things like, it will get better or it doesn't look like anything is really wrong, or I know it's hard now, but it will not always be this way...etc.... and unless you have personally had to watch someone you love so dearly, morph before you eyes and without your permission, into someone you barely recognize and know - you don't always understand what it takes to mentally and physically live this kind of life.

People constantly compliment Scott on his weight loss. "He looks so good. He looks amazing. How is he doing that? Aren't you so proud of him?" If I never get anything else across to you, let me share this. It's not amazing that he has lost 140 lbs. It's not something he feels proud of. It's not a compliment to tell a cancer patient that since they've been so sick, and wishing God would just take them, rather than keep them here experiencing this pain and heartache,  now that they are thin, they should really be excited about that!

Its wonderful to be healthy. It's fantastic to be fit. Weight loss during illness does not equate to happily ever after and finally achieving weight loss goals. You ask him, if he would rather be fat and healthy with his career and his memory...or sick and thin from his treatment, retired and without some of his brain, which do think he will choose? For any one out there who thinks finally reaching your goal weight is the cherry on top of this whole cancer thing...it's not. It's one hell of a consolation prize for loosing so many other things you once held so dear and hardly worth it.

And then there's me. Angry with people for thinking he has this whole thing beat because he looks so good and seems so happy. I'm jealous of the weight loss, because I can't do it too. Feeling lost and frustrated that he gets to be home with the kids and run the house, while I don't get to anymore. He gets to sleep and do whatever he wants during the day, and I don't. My life doesn't feel my own anymore and even though I feel this way, so does he. I tell myself the same thing I just told you.

But I'm still mad about it.

It doesn't mean I've lost hope...don't get me wrong. We have asked the question, what is the point of all of this? Should we keep doing this? What if we try so hard and we loose anyway? I have cried and screamed and cursed God for all of this. We have bad days, or weeks or months.

And then, something happens.

The anger and resentment subsides. The smile returns to our faces. We can laugh, we can forgive each other for being weak in moments that overwhelm us. We remember that neither one of us asked for this and we are not in control. We can, look for the good in each other and those around us. We finally find a way to say the things we keep inside for fear of being rejected or abandoned. We find that in letting go, a new kind of security finds its way into our thoughts.

We keep moving forward because no other direction makes sense and we hold on to what we know, what we have made, and what we have practiced because that's how we hunt for hope.

Surgery

Scott's tumor is growing. The MRI in October, showed that it's progressing. At the neuro follow up in November the doctor said it was time to get in there and retract as much of it as they can, so we can understand what it is and how best to treat it.

So here we are. January 4, 2015. Eleven long, unknowing, hope-filled months later and he is scheduled for surgery on the 16th. We know he will have to actually go through with it this time.

We don't know if it is malignant or not at this point. We are hoping for the best. There is a chance they can take much of the tumor (but not all because of it's position on the left temporal lobe where speech, much of our memory and cognition happens) and use radiation to shrink it.

Scott is hopeful today. He says he knows there is purpose for this to happen at this point in his life. He is optimistic that he will make a full recovery. He is scared, too. But that doesn't overshadow his twinkling eyes telling me everything is going to be fine.

I have cried more tears, shared more fears, and been at the depths of despair over the past 11 months than I care to think about. But the one thing I keep coming back to is the thought that there is hope for this to bring about something new and different. It's scary because it's unknown. But unknown isn't always bad. Scary, unknown, different....

AND....

We have survived well to this point. We have felt the sorrow, the pain, the disappointments, as well as found utter joy, been extremely happy, enjoyed the fulfillment of being together instead of suffering alone. Oh, how I wish the days were not ticking down to brain surgery. But they are. And there is nothing we can do but go boldly into it and know we have prepared ourselves for that moment as well as we can.

We know what hope feels like because we have had it with us in various amounts all along to this point. We have seen it. We have shared it with those around us. Hope doesn't change what is happening. But it does change our outlook on things and help us react in less negative ways. We can't control what is to happen. We only have control over our own reactions to these events. This is exactly the place hope can sneak in and whisper to our hearts..."You are not alone. And this too. This is not all. Tomorrow is a new day."

As the hunter who carefully prepares for his hunt, we have scouted and prayed for hope to come our way. We have positioned ourselves to be in hope's path. We know where to find it. We have it stored up for times when we will need it most. We have used it when we needed it. We have made the most of the time we have had to this point. We haven't wasted it. 

Like the hunter he is, Scott has prepared himself physically and emotionally for whatever is to come. That involved many, many days and nights of being alone with himself, with his thoughts, mentally going over his game plan, making notes for preparation to come later. He has also helped to prepare us.

It drove me nuts sometimes. Sometimes to the point of feeling left out or forgotten. But he had to do what he needed to do to get ready for the biggest hunt of his life. He also had to prepare me for the biggest hunt of mine.

I won't speak for him. These are just my observations. But if anyone can ever really be ready for such a life changing event, I think he is. His courage is astounding. I have been hard on him many times over the years. But what I used to see as him shutting down and pulling away, I now understand is his way of preparing himself for being away from the people he loves most in this world. Whether for a few days for a few weeks, he needs to be able to be where he is, present in that space, so he can do what he is there to do. Whether work or hunt, that is is his way.

I used to curse it. Now I am better able to recognize it and embrace it for what it is. Bravery in the face of the unknown. He has taught me well. I only hope I can live up to the example he is and be as brave and optimistic going forward as he has always been.

A true hunter never really stops hunting. There is always something in the works even when it's not the time. The season will come again and the hunter needs to be ready. My hunter seems ready.

Since the season of hope never really closes, we are ever hunting wherever we can find it. Today, it's in the sunrise. We woke up today. We have another day to make memories and live our lives together. We have each other. We have our children. We have family and friends who continue an out pouring of love and support. We have some awesome memories we can channel anytime we need them to remind us that all is not lost.

We will certainly need all the prayers, love and support we can get for the days ahead. I will do my best to keep posting progress and prognosis as I know it. For now, we are going to enjoy these next 2 weeks as much as we can and be prepared with optimism for the day of surgery and recovery to follow.

We hope...and we live with this thing that controls our life in way we dislike, but we aren't bitter. We hope to understand the purpose soon, but until that time comes, we will be hoping and hope and keep hoping some more, that someday soon we can find something else to hope for.