The slow progression...

We’re all surviving here. It’s a new, surreal sort of survival. I had almost become used to the constant chaos. Watching David for the slightest hint of infection or change. Whisking him off to unending doctor appointments. The ER visits. The ICU stays. The continuous state of panic and worry. Living on adrenaline. Able to go days without sleep or even eating really. Continually waiting for the next shoe to drop. But now. Now it is different. The shoe has dropped and it’s sitting in the room my friends.

There is no more worry about scans and what it will show. Is there tumor recurrence? Are we safe for yet another month? Those worries are gone. Now we have the new worries. We’re no longer worried about it coming back…because it’s here. Now we worry about what it’s doing. Where it’s going? Watching David’s gradual loss of strength and the slow and subtle cognitive changes. Worrying about what will come next.

Some days I don’t even have time to think about everything that is going on or what this will all mean…because getting through the days are difficult enough. Both boys require more and more attention and it’s getting difficult for me to manage. Dave will have lists of things he wants to do or things he needs help on. Unfortunately, many he is unable to do and he has a tough time accepting that and it’s very frustrating for him. He needs more and more assistance with just daily maintenance like dressing and eating and that is difficult for him as well. Alec has become clingier with me and he’s become my little shadow…going everywhere with me. Understandable considering the changes he sees in his father. He wants to keep an eye on me at all times. He’s an amazing little guy, but no matter how grounded and emotionally stable he is…the changes in our life are taking its toll.

It can be exhausting to have two people completely dependant on you round the clock. I continue to loose weight although I am getting my three meals a day in. But I rarely get to finish because by the time I get both fed and am sitting down to enjoy a meal myself, one or both are invariably done and ready to do the next thing. The weight loss is great. It was something I have been trying to do for years…and yet I wish one could choose where to loose it. I used to be quite the voluptuous lady and now the girls just aren’t what they used to be! I could fit two gerbils in my bra cups at this point and they still might have room for a tea party in there! But we all know there are definitely worse things in life and this change I too will adjust to. Just kinda sucks. But enough about gerbils...because really, do they even like tea?

So what do we do now? That's the question of the hour. I don't want to just sit here and watch the slow progression of the tumor, but some evenings it seems as if that's just what we're doing. Some nights David is chatty and willing to do things. Others, he's exhausted and non-communicative. We continue to try and enjoy the summer days and continue to move forward, but it's getting increasingly difficult. The periods of "play time" are shortening but at least we are still able to have them. I guess that is what counts right now.

We will continue to enjoy the moments now and try not to not worry about the future or the unknowns that await us. The future will wait...at least we have today.

Change...

Cancer has brought a lot of changes into our life…and not all of it bad. It seems strange to say, but it’s true. People have come into our lives that otherwise might not have if not for the big “C”.

Life if full of people coming and going…paths parting and reconnecting. Many people whom our paths might not have ever re-joined have come back into our lives to offer love and support. I’ve met some amazing people through all of this and many of whom I feel will be a part of my life for many years to come. People whom hither-to were more acquaintances have now become an integral part of my life. I’ve been amazed by the outpouring of support. Not to discount the men in our lives…but the ladies have been amazing as of late. I’m reminded of one of those goofy emails that always get sent about that says, “Get yourself some girlfriends.” I never quite understood that email. For much of my life, I had mainly men as good friends. I never really understood the whole “mystic” of girlfriends, but I’ve recently begun to.

These women have an amazing strength and compassion within. Without a second thought, they’ve become a part of our lives. They have looked at the chaos surrounding us and figured out what I needed most when I couldn’t tell them myself. They’ve gotten down into the thick of it and done the dirty jobs like cat boxes or bathrooms without even being asked. They have brought food, cleaned, and washed clothes and basically helped me keep my household running. They have seen the wacky stuff that goes on in my daily life and even seen the darker side of Cancer, and yet they keep coming back. They have taken David out and made sure he has had fun days and they have played with Alec and helped him forget about all the confusing changes going on in his world. They have made sure that I was taking care of myself as well…giving me breaks so I could get a quick nap in and they have called me out when I wasn't eating or taking proper care of myself. They’ve listened as I cried and offered advice when I needed it. And sometimes they just sat with me when I needed company and there were no more words left to say and they’ve made me laugh when things were so bad I thought all of the laughter had gone out of the world.

I never expected this journey or all the joy, sorrow, and change it would bring with it... but I’m glad I have you guys here with me now.

Cancer has not only changed our life, but it has changed myself as well. And that too is not altogether bad. I actually like the person I have become in the last two years. Or maybe this was always who I was…and it just took this journey to make me realize it. But I am more confident and grounded that I have ever been in my life. I know I’m stronger that I ever thought possible and I know that I’m a warrior and a survivor. Sometimes it feels so messed up that such good things have come from such a tragic situation. But I guess that is how life is…there is always a balance.

You can't always pick the roads life leads you...but at least you can choose to embrace the good things that happen along the way...

The world spins madly on...

Yesterday was one of those days where you just want to curl up into a ball and cry. We met with Hospice. No, we’re not ready for them yet. But we have to choose one, so that when the time comes we have one in place. And this isn’t the sort of thing you want to be doing at the last moment. Pulling a random name out of a hat when it’s hitting the fan is the last thing we want to do. These are the people that will be insuring that David is getting the best possible care and that his needs are being met. They also will be making sure that Alec and I are not going under as well, as things progress. Not a fun day and not a fun topic. None of this end-of-life crap is. It’s heartbreaking and emotional. But we’re getting through it. Although more often than not, I don’t know how.

But we get through each day. Some good. Some bad. Most feel surreal to us. We look around and everyone’s lives are continuing on...as they should be. It’s summer. People are doing yard work, grilling, going on walks, and enjoying lazy summer days. We’re trying…we truly are. We are doing fun things each and every day. Memories that will have to last us a lifetime. And yet it’s still so difficult, because I feel as if we are standing outside the world...looking in. Everyone’s lives are continuing, but ours are standing still. We’re in Cancer World. A world filled with doctors, medicine, treatments, uncertainty, hope and fear. I don’t even know what it’s like in the other world anymore. This is my life. David is my life and Cancer right now seems to be encompassing it. I’m reminded of the The Weepies song “The world spins madly on.” This song just seems to resonate with me right now. Not that I wake up and wish that I was dead. I don’t want you guys freaking out and calling in an intervention. The melody just seems to capture my mood as of late. And there is a line, “I watch the stars through my windowsill. The whole world is moving. But I’m standing still.” It just seems to fit today. I tend to connect to music anyways. Throughout our courtship, marriage and life, it has played an integral part. Songs become something I identify with. Kind of like sign posts for the moments in our lives. Little musical moments that bring back specific memories and emotions. And this one just feels like where I’m at and where I’m going right now.

Below is a wacky link to a free search of it. Just click the play button on the top. I didn’t have the energy to dink about with it more. If someone knows a fast way to link a song to my blog…let me know.


SeeqPod - Playable Search