Life's Journey

I haven't posted in a while - I guess there just hasn't been much to report. I've been spending the past couple weeks trying to catch up with myself. I had so many back to back long weekend trips that I just crashed - hard! Last week was Week 1 of the third three week cycle and the first week always seems to hit me pretty hard. Today was chemo Week 2. This is day 221 of treatments this time around. That's a lot of treatment. My doctors and nurses are amazed that I am still up and about doing all these amazing things - honestly I am too. I think I just want so badly to keep up a "normal" existence during all this and it pushes me to keep going. There are things I want to do, places I want to go, people I want to see - I'm not ready to give in to all this yet! But, I must be honest with myself, it's definitely taking a toll on me….

I've been getting pretty bad headaches over the past month or two. They linger and they are tough. I've tried a lot of over the counter headache meds and nothing has touched it. We ran an MRI on my head just to be sure this was nothing more than headaches. The MRI showed no legions or masses - dodged a bullet on that one. But, it doesn't explain why these headaches keep coming. I guess we just chock it up to chemo. So I'm armed with every pain med known to man now. The problem is that the pain meds really knock me out so I try not to take them. But the weeks with bone/skull pain on top of rippin headaches I succumbed to the pain meds a few times. They help and they make me rest at the same time. Tomorrow I have to get one of the bone pain shots because I'm taking next week as a break. Roy and I are headed out on a road trip for the 4th of July week - more on that later. But, because of this I need to take a week off and we will be pretty much in the middle of nowhere so they said this shot is a must-do. Ugh, sigh, stomp! I don't wanna! I get it, I know, sometimes you have to do things you don't wanna do so I will, as usual, suck it up and deal with it!

There are lots of other side effects that have been hitting me over the past few weeks. There is some new pain in my lower abdomen/pelvis region. I really hate the pain part. Not only does it just suck, I mean no one wants pain all the time and you just can't get away from it. But, also, the only thing I can do to help it is the pain meds and muscle relaxers - at this point I just refuse to live on these meds. So, I deal with it and take a pill every now and then when I hafta. I didn't realize how painful this was going to get, and I'm guessing this is just the beginning. This is one of those things that I cannot control (frustrating but fact). Just taking it one day at a time. What else? I'm tired. All the time. I find that little things will wipe me out lately. I'm more nauseas - but there are good pills for that and they really help without too many side effects of their own thankfully.

Let me also tell you again that chemo brain is real. I've talked a little about this before but now I'm finding that it's progressive so I notice it more and more. It's strange how it works too. I find that while I am working I seem to be pretty good. Every once in a while I lose my train of thought but can generally get back on track quickly. Let’s be honest even before chemo brain I'm fairly easily distracted - wait, what is that? Shiny object? I notice it more while doing everyday things. In the beginning I would find myself going into a room and not remembering why I was there. But now I will need to get a notebook out of my office and find myself in the kitchen opening the silverware drawer and questioning what I'm looking for. If I stand there long enough and really focus it comes back and I realize what's happened. So weird. I hope this is as bad as it gets. I'm a pretty smart chick, I don't like not being able to control this one. And, there's nothing out there to help with this fun side effect. The medical world is just starting to acknowledge that this is a real thing. I bought "brain games" for my iPad and books of brain puzzles and stuff to try to keep it working. Pretty soon I'll just start wandering aimlessly around the house. But, I'll be damn good at word puzzles and finding patterns in numbers. Oh crap - I'll be Rain Man! LOL!

These are all just the realities of having metastatic cancer. Not awesome, but it is what it is. I can bitch about it or I can suck it up, accept it, and live my life. I think you all know by now that I choose the latter!

So, I'm living my life the way I want to now. Our trip next week is going to be amazing! We are driving up to the North Rim of the Grand Canyon to start and then heading up to Utah. We are doing what they call the Grand Circle - seeing the 5 big parks in southern Utah. We start with Zion, then Bryce. From Bryce we are taking Byway 12 which is labeled the "Most Scenic Drive in the US" to Capitol Reef. Then over to Arches and Canyonlands. Phew, it's going to be a lot of amazing scenery in 4 days! I have it plotted out - per my usual OCD we have a color coded map and itinerary. I found small hikes we can do at each location and lots of scenic drives. We will leave Utah on the 3rd and drive to Farmington New Mexico to spend the 4th and weekend with Roy's family. His dad lives there and brother and sister in law are driving in with the nieces and we will get to see the nephews too! I'm excited to see everyone and spend a few days together. It's going to be a taxing week so I am going to "try" to pace myself. I think this will be a reality smack of my true limitations on this trip. I'm so used to being able to get out and go, go, go! I have to be realistic this time around and that's not easy for me. I had a little heart to heart with my super nurse Michele today at treatment. While she is proud of me for getting out and doing these things she gave me a little reminder of the realities of my world now. I have to be careful, I have to listen to my body and learn to respect my limitations. I'm sure I will post along the way and let you all know how it's going. It's an exciting trip!

The realities are not rainbows and unicorns. Just the other day I caught myself saying "I just want to feel good for one day". I hate that I’m in that place but sometimes it all builds up and it happens. Sometimes I cry, sometimes I'm blue, sometimes I just want to go to never never land and hide among the lost boys. I give myself limits now - I will let myself be blue for a set amount of time and then I will snap out of it. I can't go there for too long, I don't want to go there for too long. I am a happy person, I am a fighter and this will not bring me down no matter how hard it tries. I read something on Pintrest yesterday that really cracked me up, it said: "Lord, I know you only give us what we can handle… apparently you think I'm a hardcore badass, and now I don't know if I’m happy about it or not." This made me laugh out loud because it's funny and because it's true. I am a self-proclaimed hardcore badass but I'm at the limit for a while. I need some time to adjust to all these new realities before more come into my world. But I guess getting used to the realities is one of the realities.

Sending hugs & smiles

Sarah