(Originally posted on our CaringBridge site: Written May 28, 2013 1:54pm)
First, we were in remission. This was intended to keep all those who cared informed of Brandon's progress through the disease and treatment.
Second, we were now navigating a whole new area of life, AC, After Cancer. The normal life of BC was loooong gone and forgotten, and the routines of During Cancer, DC, were now not needed...so figuring out what AC looked like was similar to learning how to walk again.
Third, as stated in my last post in July 2011, it was then my body's turn to act up and turn on me, leaving me very sick and relatively bedridden for quite some time, and not in any state to update the website.
But recently, Brandon and I have been following numerous other people's battles with cancer, many through CaringBridge, and as one patient recently won a very difficult battle with cancer I found myself so curious as to how life is going for her AC. This then led to a pressing feeling to get back on here and document the journey after cancer, as many people have privately contacted us wondering how it has been going.
I am kicking myself in the butt for not journaling much at all in the past 2 years. I was amazed at how much it helped me through cancer, and I'm afraid it could have helped me a lot in navigating the difficult road after cancer, had I actually done so.
I am terrible at consistently writing in a journal, I think because I can't write as fast as I think, and my handwriting gets terribly sloppy, then the joint pain in my hands makes it harder to write and keep up with my thoughts, and I get so annoyed with my sloppy penmanship.
Yeah...I'm just a little Type-A...
Then, on top of that, I get so distracted with what context I should be writing in. Should I just be spewing my thoughts randomly onto the page? Should I be giving background to the thoughts I am having? Explaining the situation at hand so that the reasons for why I am upset make sense? Does that even matter, cause who the heck is gonna read it anyhow? But what if I look back on it someday and it's all just jibberish because I have no idea what I was talking about? <SIGH>
I did try type-journaling for a while. That helped a lot with the handwriting issues and getting my thoughts out quicker, and it allowed me to edit. Yeah, yeah - I know, editing is not the point to journaling but I can't help it.
Regardless, it didn't help the other issues, and it didn't help me to desire to write it. Type-A people usually find it completely senseless to write something that nobody will ever read. A waste of time and pointless. Yeah, maybe I would read it someday - but when the handwriting is so sloppy, how could I?
But I did find that I consistently updated this site. Why? Probably because there were people who read it because they wanted to follow Brandon's progress and our journey through cancer. They wanted to know how to pray for us.
But also because it was therapeutic to me. It helped me to process the situation and organize all the thoughts that were constantly spinning in my head.
Since July of 2011 two things have happened.
One, a Hayslip/Wilkerson family friend gave us the sweetest gift, a photo book of all of my CaringBridge entries of our journey with pictures, scripture, song lyrics and the guestbook entries. A beautiful chronicle of our battle with cancer. And I treasure it so much! It is something I had thought of doing many times, but we were still too close to that difficult time, and I could not yet bare to go back and reread it and experience it again. But now we have it to look back on, and remember how God got us through, and how we were shaped into the people we are today by that life changing time.
Two, I have been contacted by multiple people in regards to our battles with lupus and cancer. How did you/Brandon get diagnosed? What were the symptoms? What tests should I get done? How did you/Brandon respond to this treatment? Did you/Brandon have this side effect?
To be honest, if I did not have the CaringBridge to look back on, there is a lot I can not remember! And to this point, CaringBridge only documented our journey through cancer. And really, only through diagnosis, surgery and treatment. Just because the cancer is gone, it does not mean our journey has ended. I wonder if others are curious about what the other side of cancer looks like for us, as I am curious about what it looks like for fellow survivors?
And when asked some detailed questions about my lupus the other day, I realized there are a lot of details to that journey of diagnosis and beginning treatment that are a jumbled mess in my head, and therefore not very helpful for my doctors or those who ask because of their own battle with lupus. We can thank that to a common symptom called 'lupus fog'. :)
So, this may be more for my own benefit than anything else, but whatever the case, I'm going to take some time to update this site on our journey in the past two years. From Brandon's remission to my lupus diagnosis, to how cancer effected our decisions in purchasing a house, to trying to find normalcy in daily life, and living on the 3 week preventative treatment cycle and it's side effects, to mysterious new debilitating symptoms for Brandon, to more cancer diagnoses in our family, and how cancer effects our family planning choices.
Yes, we may have gotten rid of the cancer cells, but not a day goes by yet that is not effected by the imprint that was left behind.
Many probably think what I did, that the battle was over and it's back to normal...
I was completely unprepared for the challenges ahead of us. I am not saying this is everyone's story, but it was ours. I wish we were the people who finished treatment and left cancer in the rear-view mirror and never looked back. But our reality was that it has trailed us ever since, sometimes closer than others, and it will forever be a part of our life.
So on to the new chapter to Our Journey: the big 'C', I'll call it:
'A NEW KIND OF NORMAL'