Tuesday, October 26, 2010

Living for, not waiting for...remission and hair!

"Don't count the days...make the days count." (Muhammad ali) 

The last few weeks have been chock filled with fall activities, all of which I am thrilled to be a part of...right down to the yard clean up. As many of you know, that is no easy task since we have hundreds of oak, pine and maple trees surrounding our home. I love the trees for the privacy and beauty they provide us, however, this time of year they give us reason to loath them. I suppose we should be thankful that they encourage our upper body conditioning as we rake and rake... and rake, and keep us outside for hours to enjoy the crisp autumn days, but usually we are just too numb to think that clearly, especially since we have to ingest several ibuprofen the next day just so we can move from one room to another! And when we look outside, the yard looks the same as it did before we raked! As each year passes, I am finding it easier to live with the leaves covering the yard and let them all come down before trying to irradicate them before the seasons change and snow begins to fall. A wise lesson learned. Plus there are so many other things I would rather be doing.

     Besides fall clean up, we have had plenty of soccer games, several visits to Fairfield and Quinnipiac, and even one trip to the hospital. Unfortunately it was for Hayleigh this time, who suffered a season ending concussion caused by a head on collision during her soccer game on October 13th. Thankfully, she is doing well today, having endured a week of headaches, dizziness and nausea. Although she would much prefer to be running around on the pitch, for now she is happy being the team mascot, number one cheerleader, and getting her teammates jazzed up before each game. This past "whirlwind" weekend we traveled to CT for Parents Weekend at Quinnipiac. The more I see and learn about that school, the more I like it. It's an incredible institution. It was really great to hear from the administration, as well as from Bret, that the teachers are very passionate about their jobs, and really go out of their way to help you succeed in the whole college experience. (Utilization, not memorization) We capped off our day on Saturday with the gastronomic experience of the original Frank Pepe's Pizza in New Haven. For those of you who aren't familiar, its the oldest pizza place in the country (or so they say) and probably the best Neapolitan pizza on the east coast! (Although I have to say, Lombardi's in NYC is a close second.) After crashing at Auntie Del's "B&B", (if you are ever in Middletown CT, it's thee place to stay if you want pampering!) we zipped down to Fairfield on Sunday to catch up with Shane and enjoy brunch at the Circle Diner! Then it was back to Easton for Hayleigh's "pasta dinner" with teammates, and a quick jog around the high school track for Fred and I. And yes, I was asleep on the couch before 9:30 that night...with a smile on my face of course.
Two months ago, I had no reason to believe that I would ever have the energy to do these things, and I am sooo relieved that my body has bounced back this way. (Now if my hair could make a comeback, I'd be tickled !) Each week that passes, I am feeling stronger and more alive than the week before. I have experienced moments of euphoria when I was actually brought to tears (happy tears!) because I have been able to jog a whole mile on the track without stopping. You have no idea how awesome that feels! So while fluid managment, blurry vision, and energy seem to be my biggest concerns for the moment, God has blessed me with days that are incredibly encouraging and uplifting.
While I realize that everyone's treatment and recovery period is different, I would like to think that I am hope. Hope for those who are recently diagnosed. Hope for those just beginning their journey. Hope for those who are still weak from the ravages of chemotherapy. It gets better. Slowly but surely, week by week, cell by cell. I have no idea if I am in remission yet, but that's OK. I won't know until late December. My family has enabled me to forget the "waiting game" between testing periods and to get on with living. We are all learning to live with AL Amyloidosis, the same way we have learned to live with the leaves from our trees every Fall...patiently letting them all fall down, and thankfully enjoying these moments, until the seasons change.
Hope and Love,
Cheryl

Tuesday, October 5, 2010

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.