It's my blog and i'll cry if i want to...

So…I decided to start this blog about my “amazing amyloid adventures”. Wiser folks than me have said it’s something really good to do because others can track your progress thru the course of treatment and post little notes of encouragement if they want, and that its somewhat therapeutic as well…(God knows I need that right about now!) Maybe that’s why they were so ‘encouraging”(??) Anyway, now that I’ve had a little time to process the “news” about my future travels thru chemo-ville and beyond, I thought I would share it with anyone who cares to ride along…

Not sure how this is all going to work, but I love the idea of this being “free speech”, the good news and the bad news, and a personal journal (venting?) of my campaign against this rare, yet fascinating disease: Primary (AL) Amyloidosis. Yes I said “campaign”. Fortunately for me, I am running unopposed! Everyone is on my side…my family, my friends and my God. Sure, I suppose you could say that I am running against myself...except I’m not. I’m actually on the winning side, my blood cells just don’t know it yet. But they will …soon enough.

For those of you who are just joining me on the trail, my story actually began last year when I first noticed that after working some long, (yet very rewarding) days at Easy Dinners, my ankles appeared to be severely swollen. This happened out of the blue one week in April and continued to plague me into May at which point I sought an opinion other than my own. (mmm…)
And so it began…back and forth to the doctor and the labs for the next 7 months. After countless tests, ultrasounds, and frustrating dead end hypotheses, it was determined that I needed to see a Nephrologist because I was leaking 10grams of protein a day from my kidneys! And my cholesterol was over 680!! Not that I even knew what that meant at that point, other than severe edema. So off I go to see Dr. Li Li Hsaio from Brigham and Women’s Hospital. What a gem! I will forever be grateful to her for catching this early. A kidney biopsy subsequently revealed the Amyloid Protiens in my kidneys. That was soooo not a fun phone call to get! Nor the most pleasant Momo-logue to have with my kids!

What the heck is Amyloidosis???...off to the internet…(isn’t that what google is for??)
BIG Mistake! Waaay too much information and not all of it good. But - I couldn’t help myself.

Amyloidosis is a group of diseases in which one or more organ systems in the body accumulate deposits of abnormal proteins known as amyloid. There is no known cause. The amyloid proteins originate in the bone marrow and travels thru the blood stream to various organs. The incidence of primary amyloid is estimated at 8 out of 1,000,000 people.

I would encourage you to visit these sites if you are interested in learning more: www.amyloidosis.org, www.amyloidosisresearchfoundation.org, or www.bu.edu/amyloid. Its actually pretty interesting stuff.

This disease is rare and sooo few people (based on info from other patients…even in the medical community) are aware of it. As a result patients are often undiagnosed for too long. The last 10 years has seen great inroads in the research for cause and more effective treatment options. Fortunately for me…we caught this early. See…I’m up in the polls already!

Then it was off to the BU Amyloid Treatment Center, one of a handful of places in the country who have pioneered research and treatment for this disease. We are incredibly lucky that this place is just a short car ride away.

Here’s where my adventure really begins…(talk about a roller coaster ride!!) 3 days of evaluation at the BU Medical Center Amyloid Clinic confirmed (after lots of yucky poking with needles!) the following:
• I do indeed have AL / Primary Amyloidosis.- bad news.
• It is not genetic - good news, (My kids wanted to have a party!...me too).
• It is currently present in my bone marrow and kidneys. All my other organs are so far unaffected by amyloids and very healthy - good news
• I am at a world renowned medical facility that has a proven success record for the
treatments to get rid of all the conniving little amyloids running around in my body - great
news.
• The treatment over the course of the next couple of months (Low Dose Chemo
pre-treatment, followed by High Dose Chemotherapy and a Stem Cell (my own) transplant
(HDC/SCT) will make me really sick and I will literally and figuratively be pulling my hair
out - bad news.
• I have an incredible husband, family, friends and God, who will hold my hand thru this
adventure, - great news.
• The outcome of the treatment...I will grow all new blood cells (this time hopefully without
Amyloids!), new hair and get stronger (and blonder!) than before - Complete Remission! -
Great news!

So there it is… my first day of blogging…and now you know.
You know the good news and the bad news. You know basically how I’m going to deal with this…(BTW, I may need some reminders by the time week 4 rolls around!)
You know that I’m otherwise healthy, strong and determined. (and maybe just a little nervous!)
You know I’m competitive by nature…ok, strong willed…ok hard headed…whatever! Those are all positive attributes right about now and I’m using everything I’ve got to win this campaign!

I know that I will need some serious "Shoe therapy" when this is all said and done. (for those of you who don’t know what that is… shoe shopping can be a “cure all” for whatever ails a women at that moment in time! One can never have too many pairs! And no…Nordstrom’s did not pay me to say that!)
I know that I am incredibly blessed to have Fred, the kids, family and friends to laugh, cry and pray with me in the months ahead.
I know that I will need to plan a serious international soccer vacation for Fred when this is over!
I know that eventually i will have to endure another Bone Marrow biopsy...(they will have to drag me in next time!)
I know there is a reason for all of this…i just don’t know what that is yet…
I know that God would not have allowed this to happen to me if he didn’t think I could handle what lies ahead, and that he’ll be with me every step of the way.

Cheryl