DAY 100!! Keeping it real...

As I sit here typing this edition of my journey, I am elated at my "comeback" and my body's response so far. I know I am getting stronger everyday. But the realist in me knows this is only the beginning. A new beginning yes, but a beginning nevertheless, of a new, and unpredictable (isn't everybody's?) life, yet one for which I am so thankful. I will return to BUMC in December, at which time they will tell me if I am in remission for the time being. If I am, I will return periodically to keep tabs on the Amyloid "factory". If I have not had a "complete response", then they will determine if I should have more chemo, or a second SCT. I do not tend to dwell on it. It is what it is. My point being... I have a new life now, just a little different from the last, because I can and must live with Amyloidosis. Reality check #1.

 "When we long for life without difficulties, be reminded that oak trees grow strong in contrary winds and diamonds are made under pressure"

(Peter Marshall)

The last few months seems surreal at times (Did I really just go through all that?? Selective memory is sometimes a good thing - LOL). But as I sit here today, fascinated by the milestone that I have reached, alone in the quiet of my room, my journey is vivid... it is very real. I have visions of all I have been through (I just had to take pictures, didn't I?!), and can recall the last 8 months as if it was yesterday. I am remembering all the incredible people who cared for me at BUMC, the science and technology that made this diagnosis and treatment possible (fascinating to say the least), my unfailing entourage -including all of you, all the needles (never did like those things, yuck!), the ice cubes (including that my daughter found the strength within herself to stay by my side the whole time!), the chemicals, the pharmaceuticals to offset the chemicals, not seeing my kids for days on end, the side effects, swelling, pain and fatigue, ...the daily blood tests (to make sure I was still headed in the right direction!), all the trips to the bathroom (enough said!), all the wonderful cards, emails and prayers, the haircuts, the other patients, then I remember... coming home. I am one of the lucky ones. There are some whom I started my journey with who are still in the hospital...fighting, and hoping to come home. And there are some who won't make it home at all. Reality check #2.


I feel incredibly blessed that I have come though this extremely aggressive (lethal!) regime as well as I have.
I still wake up each morning thinking about my disease, but I also wake up thankful for everyday, I try to find joy in everyday tasks, and the things that I am able to do. I love that I am able to be home and spend time with Fred and Hayleigh (when they are not on the soccer pitch!), and Tess. (She's baaaack yeah!) I miss my boys terribly and feel like I barely saw them this past summer. I love that I am able to do things like drive myself places, get out to the store (shoes shopping of course!), take my dog for a walk, visit with family and friends (an arms length apart of course), go for bike rides, make apple pies, watch my daughter play soccer, do laundry and clean my house (God help me...did I really just say that!!) Life is good. Reality check #3

As Fred will attest, yes, at times I am frustrated because I cannot return to work yet (that would require being able to be on my feet all day!),and I can't do a lot of the things I used to do. Some days when I am totally fatigued, I am made acutely aware of what this disease and the treatment has done to my body. Please don't confuse this with depression, or pessimism. I am still an optimist, and I still have great faith in my doctors, my body's ability to fight this disease, and for my God for giving me the strength to deal with this head on. But I am not delusional. (that would require some sort of denial on my part) I am a realist. I have accepted my plight, found peace with what I now know about my future, and to use my friend Fay's words, I will deal with it day to day. Some days will just be better than others, that's all...and that's life (with or without amyloidosis!) But I am here. Reality check #4


An old friend of mine said to me several months ago, that after I was done with my chemo and SCT, I would say to him "that wasn't as bad as I thought". THAT is sooo not going to happen! But what I will say is (besides "I hope I never have to do that again!"),  is that not everything about my journey was bad. It has been a life changing experience for me and for those closest to me.Like many others who have come through a challenge such as this ( and I know I am not alone!), I have a greater appreciation for things that we often take for granted. The last 8 months have given me a renewed awareness for my life's purpose (a work in progress), and.I discovered things about myself and about our human nature which will definitely influence my future . "Within our wounds, we most often find our true strength". I am changed. Reality Check #5

I am...keeping it real.