It has not been my intention to be blog-gone for the last couple of months (111 days to be exact). Truthfully, there were many times when I sat down, wrote for a bit, only to find myself crying buckets, unable to finish. (blue is more than just a color) There were also times when I would begin to blog only to be drawn away by one of life's many responsibilities/pleasures and by the time I got back to it, it was outdated so I didn't bother publishing it. Life goes on and as you can imagine, I'm thrilled to take part in it any way I can!! At times it was easier to just be busy doing things than to sit and process about all the thoughts swirling around in my head. In hindsight, I would have been better off "downloading" the thoughts instead of "compressing" them in my mind. More on that later...
So I will try to bring you all up to speed on what's been going on...briefly. (hehe)
The holidays were a wonderful celebration of recovery and renewal with our family and friends. On Christmas Day we departed for a west coast adventure taking in a Portland, Vancouver, and Whistler BC( yes I actually skied for 2 days!), even an overnight in Seattle including a quick trip to Pikes Place (of course Hayleigh and I had to get our Starbucks coffee). The trip began with my mother-in-laws 80th birthday celebration and a long awaited family reunion hosted by Fred's brother Steve and his family. Three days of incredible food, wine and family banter. Our week culminated with a northern detour to Whistler for some all out "shushing" down some of the most beautiful peaks in the world. The views as well as the time with my family took my breath away (literally). It was hard to come back to reality.
February and March were equally as busy and filled with lots of life-moments to cherish.
Hayleigh turned sweet 16 (need I say more! Boys, cars, curfews, and shopping!). We also celebrated Bret's 19th birthday, and he is now a proud member of Sigma Phi Epsilon. Shane survived "spring break" in the Bahamas (I can finally sleep again) and is busy filling his time with school, interviews and (more) parties until he graduates in May. I am just so humbled and grateful to be part of their lives in every way I can...as they grow their wings.
Sooo...back to my "download" issue...something I have been unable to complete for 3 months.
Besides everyday "life" gladly taking a starring role here, truthfully, I was very quick to find lots of other projects to protect me from sitting down and coming clean with what was really going on inside me. There was a part of me that didn't want to face all these strange and negative thoughts. I wanted to push them back as if they didn't exist. Unfortunately, with repression comes depression.
Initially I was taken back by these thoughts and fears. They would creep into my brain at the oddest times. I wouldn't talk about them with anyone. For weeks, I had to drag myself out of bed just to face the day. I didn't want to do anything or go anywhere. I was paralyzed. Fred would check in with me several times throughout the day: "Hi honey...whatcha doin?" My flip response was often..."eating BonBons". Of course I was kidding...but what was I gonna say? I couldn't get out of my PJ's! What the heck?? How and why could I possibly feel this way? I tried ignoring them...denying them...hiding them...walking more...staying busy...and I prayed a lot. Besides all of these useless thoughts, I was also dealing with the fact that my body had reached a plateau. It was not responding as quickly or as well as I had planned anyway. (I know...I know, its not my plan! but you know I always need to put my two cents in!). I think somewhere along the line (?), I came up with the idea that physically I was going to be just like I was before. That I was going to be able to do all the things I could do before.(Not gonna let a little stem cell transplant get in my way! LOL.) Plus...they said I'm in remission...so I must be all better right??
Yes and no. The lesson I learned here is especially important for all those current and future patients who are reading this. Everyone heals differently, and there is no denying that you have physical as well as emotional aspects about you that have changed, and that need to be addressed. (denial only works so long) They definitely work in tandem so you need to work at rehabilitating both. It is important to try and be active, but you need to recognize that things are not the same as they once were. I guess you could say that I was just not ready to accept the quality of these changes. (stubborn irish lassie!) As I have said before, the Amyloid is like cement in your body, often taking years to break down (they are currently doing trials in the UK on treatment to speed this up). As a result I still have all the symptoms (most of which you cannot see) I had prior to treatment.Weird, I know. (If you think that doesn't mess with your mind...you're wrong) Bottom line is that despite shutting the amyloid factory down, I have some "considerations" which in the scheme of things are totally acceptable. So now I am embracing a new word...balance. I was always an active person and love staying busy, but "busy" for me now just means something different. It is a balancing act between doing all the things I want to do (because I can!) and accepting the fact that my body (and mind) might need more time at rest. It should come as no surprise that I'm probably always gonna push for that next level but I have learned to recognize my limits before its too late.
It's all good now. Really it is. But wow...I certainly wasn't expecting that to happen to me. For those of you who know me, you know that I am usually an upbeat person and I have been very positive throughout this whole challenge.Why did this happen now?? Hard to figure, especially since I had such a great result from the treatment.
If I sounded just a bit ungrateful...please be assured that I am not...at all. I am sooo thankful for the treatment, and the results that I received. I am still incredibly hopeful and positive in my fight against this disease. I talk to other Amyloid patients frequently and I know that I am one of the lucky ones. Part of my brain just needed to get all of that:). I have come to find out that apparently these thoughts and feelings are very normal for anyone who has faced a life- changing disease or situation. You can encounter them before, during or after treatment. My oncologist jokingly says I'm just a late bloomer. I have been so focused on the "physical" aspects of healing that I was not prepared for the "emotional" wounds... (not that they didn't warn me...I just thought I was immune...who me?? LOL!) So after a few weeks of ridiculous self pity and "mood disturbances", I'm in a much better place now. Not that these fears don't find their way into my now pixie-covered brain occasionally (perfectly normal), but now I know whats happening and can deal with them before they invade my space:). I am so blessed. Life is good, ...and balanced :)
In time, I will have less and less of these thoughts and I will begin to feel stronger physically and emotionally. In time, I will not be thinking about this disease when I wake up every morning or as I go to bed each night. Lucky for me..."Time heals the wounds no one can see" (Todd Rundgren/Healing album 1983)
Next month I will go in to BU for a "lab only" (only 21 vials! LOL) visit to see if I need to go back in June for the (dreaded) biopsy...and I promise I will let you know how it goes :)
I always look forward to going to the clinic. They are wonderful people. I just wish they would keep their needles to themselves!
It goes without saying that we have much to pray about these days. (Japan!) Please include my amyloid friends (and their caregivers) in your prayers. Fay, Brian, and Robert, Cilla, Laura, and Jane to name a few. They too need Gods strength and mercy to help them fight against this horrible disease.
Love to all, and thank you so much for your continued support and encouragement!
Cheryl
