I recently had my one year anniversary of my D-Day (diagnosis day). It's been a year! It's been a year! I'm hoping if maybe I repeat it over and over again I might get used to the idea that IT'S BEEN A YEAR! It's so hard to believe, inconceivable almost. I had planned to update on D-Day but once I really thought about it, I was diagnosed on a Tuesday, October 27th but the diagnosis really incorporated the rest of that week and the weekend, so I had to wait.
Four days after D-Day was Halloween. So although I did my fair share of wallering in my pity I had no choice but to snap to. I had no idea whether that would be the very last Halloween that I would be able to take my boys trick-or-treating. If I would be around the next year to help pick costumes, to alter the costumes, or to relish in walking door to door seeking the best candy. That was such a sweet evening but also a very bitter one in the same respect.
Five days after D-Day was my beautiful oldest boy's 9th Birthday. It absolutely killed me that it wasn't 'business as usual' for his birthday. His Birthday Party had to be cancelled (it was the following week) which broke my heart. We went out to Pizza Hut, as we have done every year, and as pictures were snapped that night by relatives I knew it wasn't only to commemorate his 9th birthday. It was both to block their tears and to capture this birthday, these "last few days" before going to the Mayo, "just in case". No language was spoken to that effect but it was like the largest elephant in the room EVER.
The following day, six days after D-Day, was the day I left for my first visit with the Mayo. At this point I couldn't even think straight. My incredibly awesome friend wanted to take some family pictures for us, something I hadn't even thought of but it was such an incredible idea. I'm so thankful to still have this 'best friend' in my life. I'm thankful she knew what needed to be done. What if I didn't come back. What if this tumor had become a death sentence that had invaded my brain. The "what ifs" could and did go on and on and were completely overwhelming that day. We were ALL overcome with tears. The pictures turned out great but there were several that she shot that the grief, sadness and pain that we were all facing shone through.
It was one heck of a week. One that I never ever want to relive. I've thought so often about the one year anniversary. How great it would be to get to that point. How everything would be back to normal then...if I could just make till then. I had it all planned out. I would celebrate it with something physical. Something to show just how far I had come. Maybe a 5k around that time or a massive kayak journey. Something BIG. After all, this was a celebration, a celebration of life and living and all that that encompassed. All I can say about those BIG plans is "the best laid plans" :)
As the day crept up on me it was so very clear that there would be no 5k. No massive kayak journey. Not even something physical. That was the bitter and it was SO very bitter. I wasn't ANYWHERE near where I thought I would be. Not even close. I was enduring yet another round of physical therapy. The spinal tumors are wreaking havoc on my neck and back. It is so painful. I have recently, finally, consented to a little pain management which felt like such a defeat. It was something I had decided I just didn't want to do. I fought it for almost a year. In my former line of work at the hospital I helped take care of quite a few pain management patients and it was so sad to me. They were hooked, unable to step away from the procedures that seemed to be holding them captive. Now, I am by no means saying that that is all pain management does, as I now know, but it was my only experience with it so when it was suggested and suggested by so many doctors that maybe we were now to that point, it felt like a resignation, a resignation from the fight. I cannot do pills (I have 2 kids that I want to be able to be 'in the moment' with every moment of everyday) so for now it's just some strategically placed lidocaine (numbing medicine) in the most painful spots of my neck and back. It has helped. I wish I could say that it is a miracle worker. It's a miracle helper. About now I will take all the 'helpers' I can get.
I fake it A LOT. I guess I would venture to say most all the time. From everyone. I felt/feel like I should be well...that was the plan...right?! It's hard for me, as competitive as I am (yes even about my health) to say "No, I haven't beat this yet". As dumb as I know that sounds that's the way I've felt. So I hide most of what I'm going through. This is NOT my life. This is NOT what was planned. I am a runner, a spinner (exercise), a gym junkie, an avid kayaker, a lover of hikes, anything adventurous. These titles have been so hard to let go of. My mind wants to do all of these things again, so badly and occasionally I even convince myself I can. That's when I crash and burn. That's when the excruciating pain reminds me I can no longer do those things. That's when reality sets in. That is such a sad day. That, my friends is a bitter pill to swallow.
The writing has tapered off because it's no longer the happy ending that we all wanted, that, at least I had anticipated. I haven't in my heart of hearts accepted that this is my life and to write or even say how horrible it all is makes it become so much more real. That it's difficult every single day. To put on a happy face so that my children, my family, that no one knows just how bad it hurts. Mainly for them because I realize how horrible it makes them feel. I have seen the pain in their face for so long. I have heard the frustration with the situation in their voice and as much as I wish I had answers for them, for myself...I don't. I know that their frustration does not lie with me but with wanting results, with wanting this awful fight to be won. I see the way they look at me, how incredibly helpless they all feel, wanting to help but knowing they can't. This one is on me guys. I'll take willingly if means the rest of my family and loved ones are healthy and happy. I guess it's more to protect them. I hide it until I absolutely can't...and then they know, and it's a sad day again. When we all signed up for the ugly truth I'm just not sure we all knew exactly what that meant.
On my D-Day anniversary I went to my favorite place in the world. I went on a boat ride to my favorite island spot and walked the beach, picked up shells and just reflected. Reflected on what a year it had been. How incredibly thankful I was for every second of it. Even the horrible seconds. I was alive, something that I was unsure I would be a year ago. I was there lounging on the beach, doing a little bit of walking and soaking in the gulf. There were so many tears that day. I think I let everything out that I had been holding in for so long. On that island, on that day, I said goodbye. Goodbye to the old life that I yearned for so much. Goodbye to all the plans, the expectations and with them, the disappointments. I came clean with myself, with my thoughts. I have NOT resigned this fight. It's time to regroup. I do have faith that one day I might actually have plans and be able to really live. In the meantime, though, I had to let it all go, give all those plans that I'm incapable of fulfilling, a funeral of sorts. I set them free, off to sea that day. It was soothing and I came back refreshed. It once again was not what I had planned but I couldn't have been more thankful for that day. That was the sweet and I'll will take every bit of sweet I can get.
A week or so later we once again had some family pictures made by that same friend. At the time I didn't realize the similarities or that it was almost a year to the day. These pictures were different in every way. They were not solemn. They were not grief stricken. There was such an excitement to them, a happiness in just being there, once again, as a family. Things are not anywhere near where I thought they would be but...I'm here and for me, for us, that's enough to be happy for.
Life does in fact go on and I wish so much that I could live strictly in the moment but I can't. These moments are tough. They are so very painful. I find myself once again looking for a point in the future that things are better. I'm unsure what that 'better' will be but I will take it whatever it is.
There's one more thing that came to mind on this day. I was overwhelmed with emotion when I thought of all of you. My readers. My friends. Those of you who have stuck by me through this and continue to sign up for this next chapter. I'm in awe of all of you. There are times I don't even want to stick by me :) You given me your prayers, your kind thoughts, your time, and sometimes even more. You've encouraged me when I felt I couldn't go on and built me up when I needed it most. I realize that most of you will never know how much you've touched me and my family but you have SO very much.
This brain tumor chick is surviving...unfortunately I'm not thriving yet but, especially around this momentous day, I'm still hopeful and that is sweet.