Each day is a gift...

Day +60...Yeah!! What a difference a week can make! I'm getting stronger every day...
Last weekend I was able to get out and to do a hike with the family at World's End in Hingham (slow and steady). After having to fight for bench space (with boys, everything is a competition!),  Fred got busy
imparting his wisdom and knowledge to the boys before they head off to college. I'm not sure the boys were listening, but at least they faked it well! Meanwhile I was all about trying to catch up... and catch my breath! Fortunately Hayleigh was with me in case I needed a push!



This weekend.Fred and I traveled to NH to see Tom Beaumont and Tom Moran participate in the Timberman Sprint Triathalon. And, as if it couldn't get any better,...Sunday we celebrated our 23rd wedding Anniversary! As my friend Margaret suggested, this past year has given all new meaning to the vow "for better or worse"! We have so much to celebrate and be thankful for. Unfortunately the kids could not be with us this weekend; Shane is already at school (in double sessions for soccer), Bret was working, and Hayleigh was in NYC with friends.
It was really great to get away on Saturday and to spend time with friends at sunny Lake Winnepesauke. Believe me, I love my home, and I am thankful to be here rather than in the hospital, but when you are in it as much as I have been, its sooo refreshing to get outside (with respect to all precautions of course). Don't worry Anthony, I know you're reading this, and I'm being very careful).

We began the day on Saturday by getting out early to see Tom B and Tom M run the triathalon @ 7AM. They both finished strong and Tom B even posted a better time than last year, despite knee surgery and a recently injured rib that cut into his training. The weather was spectacular and there were lots of family and friends cheering them through the ups and downs of the race course. Of course, I was out there with my rather loud and obnoxious Nike cow bell, making sure that all the neighbors at Chantecleer Shores were awake to watch the festivities. Even mom (Kay) made the drive to the lake from CT to see him run. I cannot thank Tom enough for putting himself out there and raising $$ in the name of Amyloidosis Research ! As I have said many times before, were it not for the research and clinical trials that have been done over the last 10 years, any hope for survival would be bleak. I cannot wait to get out there myself and promote a program of awareness and education for both the medical community and patients about this rare disease. Bottom line is that if more primary physicians as well as specialists recognized this disease, patients would be diagnosed earlier, and through new and developing chemo- therapies, have a better chance for hope and life.(more on this another time!)

By 10am, (apres-race) I was looking for coffee to keep my energy flowing, which meant Fred had to make a quick run to "DD" , then we all settled in on Tom and Sue B's deck to rest and 'catch up'. (I was tired after ringin' that bell all morning LOL!)  Sue made sure I got the lounge chair of course, although I would have gladly given it up for Tom. It was so great to see everyone and to thank them personally for all the support and encouragement that they have shared with Fred and I during this past year. Sometimes the words don't come easy, just tears. We are incredibly blessed to have such wonderful friends.

Jim, Evelyn, Sue, Fred, "chrome dome", Sue, Tom

Colin, Tom , Sue

                          
Fred and I sadly said our good-byes and headed back to Easton, stopping in Boston to have a quick toast with another couple who share the same anniversary. It was a long but wonderful day.
Sunday morning came way too quickly and after catching up on rest most of the morning (hey...I needed it!) I went for a 30 minute walk (in preparation for next years Timberman Sprint of course ) before commencing prep work for a special "anniversary" dinner for Fred and I: Chophouse salad with peaches and home grown tomatoes, Herb Crusted Filet Mignon, a perfect Chateau St. Jean Cab, and a Plum Galette for dessert. Easy and deelish...If it wasn't for the fact that I had to leave my Filet on the grill for 10 minutes longer than Fred's, dinner would have been perfect! (I won't see medium rare for a long time!)
This coming week we will be somewhat emotional for me (more tears). Besides Hayleigh enduring the dreaded "double sessions" for HS soccer, we are moving Bret to Quinnipiac to begin his freshman year. He is very excited about his new adventure and anxious to meet his roommates for the next year. Now, don't get me wrong, we are truly excited for him as well (after all, we worked so hard all these years to get him to this point, right?) but it is bittersweet to see him finally leave to begin this chapter of his life.(and it has nothing to do with tuition payments!!)  Breath...pray...breath...pray! LOL
Our house will certainly be different this year (notice I didn't say quieter??) with just Hayleigh, Fred and I fighting over the the sectional and leftover pizza, but I'm sure in between high school soccer games and Hayleighs social calendar, we will fit in plenty of visits to Connecticut to see Shane and Bret. Its great that they are within a half  hour of each other too, so we can catch both of them in one trip!

Still no hair...but I'm here, "dancing in the rain", so I'm thankful for each new day.
Thanks for all of your donations to research and the continued prayers for me and my new "amyloid" friends.


Love and "air hugs",
Cheryl

Wolfie...RIP, we love you and miss you!
 

Join TEAM KURTZ to help find a cure for Amyloidosis !

Hi Everyone...

I hope you will take the time to read the letter below from my good friend 

Tom Beaumont. Tom will be competing in a Triathlon in a few weeks in 

support of Amyloidosis Research. As much as I would love to run, swim 

and bike along side him on that day, the doctors have gently suggested 

that I wait until next year (ya think??!) Plus, I don't want to hold him up...

my money's on Tom to win it this year!! 

As most of you already know, research has not identified what causes

Amyloidosis and consequently there is no cure...only treatment.

Every patient presents differently (depending on the organ involvement) 

and reacts differently to medications. Initial diagnosis and treatments that 

exist now are a result of years of ongoing research and clinical trials. I 

thank God for these! The work that has been done in the last 8-10 years 

will probably save my life, and provide more treatment options and success 

stories in the years to come. (Just in case there was any doubt...I plan on 

being one of those!!) I hope that you will consider donating even if it's 

just $5, to this very worthy cause. The folks at BU have been pioneers in 

this field for over 20 years. They won't stop until they have all the answers. 

But they need your help to continue. The dedication of Drs. Seldin, 

Sanchorawala, Skinner, and many other doctors and researchers who study 

and treat Amyloid patients is second to none. I am incredibly blessed and 

fortunate to have been in their care (as well as that of my fabulous 

entourage!) 

Everyday, I wake up in my own bed, feeling stronger and more alive than

I did the day before. I know that I have a long road ahead of me and that 

I could not have come this far without God's unfailing presence and grace, 

all of your prayers, encouragement, and humorous emails, and oh yeah, 

let's not forget, the really powerful drugs they gave me at BU Med Ctr! 

Thank you, thank you, thank you!!

Love, Cheryl 

************************************************************ 

Happy summer to all!  I hope that everyone is taking advantage of this time
to spend with family and friends.  Keep the barbecue stoked with the
burgers and dogs cooking, and the cool drinks flowing.

I NEED YOUR HELP !  I'm sure that you all know that I have been preparing
for a couple events this summer. The Black Fly Tri at Waterville Valley was
fun.   The Timberman Sprint is the big one on my list again this year.  The
race last year was so much fun. I snuck way into the top third of the a pack
of over 1100 athletes.  Your generous donations to Make-A-Wish made the
event even more special. Thanks to all of you for your support last year. 

This year's event will take place on August 21, 2010.  My training this
winter was slowed by some very minor knee surgery, but I'm back on my horse
with renewed inspiration. This year I have become part of "Cheryl's Amyloid
Adventure".  My friend and former ski buddy, Cheryl Kurtz was not feeling
very well and her doctors sent her to Boston for tests. The diagnosis took a
while, but she was found to have Amyloidosis and has spent almost all of her
time as a patient of the BU Amyloid Treatment Center since April.

Cheryl's first reaction to her doctor's diagnosis 

was......"What the heck is Amyloidosis"?!

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 travel
through the blood stream to various organs. The incidence of primary amyloid
is estimated at 8 out of 1,000,000 people.  It is a very rare disease, but
fortunately she has the BU Amyloid Treatment Center.

I was first made aware of the disease some years back when my father-in -law
was found to have it.  Today it is in his bones, but has not moved into
other organs. He never would have know he had it if the doctor's had not
found it while testing for something else. The disease can remain in the
body  undetected. For Cheryl, the amyloid protein was found in her bone
marrow and kidneys. Fortunately for Cheryl they caught it early.  Since
April Cheryl has been tested, poked and prodded. She has endured Chemo, 

a stem  cell replacement and a mind numbing battery of other tests and procedures.
 I check her Blog every day to keep in touch from the sidelines. She has had
an incredibly strong spirit and a positive attitude. She is aided by
wonderfully supportive family, friends, talented doctors and caring nurses.

Many of you reading this note know Cheryl personally. Most do not, but do
know others like her. Many of you are Jimmy Fund Supporters, Pan-Mass
challengers, Rodman Riders, and Codman walkers. You have shown a willingness
to walk, ride or run for so many other important causes. You understand just
how hard we must work to help fund those projects that will find the cause,
treatment and cures. You also understand that "EVERY LITTLE BIT HELPS". 

The patients fight for their own health, but they and others need your help.

Cheryl's spirit has been an inspiration to me over the last few months. It
is not always easy to head to the pool early in the morning when the snow is
flying. Jumping on the bike or running through the rain is not always fun.
The bottom line is that so many of us have it easy when we have our health.

Continue the inspiration !  Get inspired yourself. Support me in my efforts
at the Timberman.  PLEASE consider making a contribution to The Boston
Medical Center for Amyloid Research . On-line contributions can be done
easily. The link is: http://www.bu.edu/amyloid/donate/form/  PLEASE remember
to go to the comment section and type in Cheryl's Amyloid Adventure.
If you like you can mail the donation directly to the address below.  

Become part of "Cheryl's Amyloid Adventure" team.

Thanks Tom Beaumont
Team Kurtz Wins!


Amyloid Treatment and Research Program
Boston University School of Medicine
C/O Cheryl's Amyloid Adventure
72 East Concord Street., K503
Boston, MA 02118
Phone: (617) 638-4317

It's Gone today....but "hair" tomorrow!

So one of the things about high dose chemotherapy that is considered a "normal" side effect is hair loss.

Everybody deals with this issue differently. While in some ways it can be devastating, embarrassing,and humbling, the reality is that it is also a small price to pay for your health considering that it will grow back over time (we hope!). I have had no problem with this conceptually.  However I cannot subscribe to the adage that "bald is beautiful", or that "hair is overrated"...especially when it comes to eyebrows and eyelashes! 

Hair, even a small amount on a woman, especially one with a tiny, bone-white head like mine, is essential! Truth be told...I look absolutely ridiculous and goofy. Del keeps saying..."but you have a perfectly shaped head"!

Come on...you can't help but laugh!

Some folks choose to be bald...and they look great...especially guys. As four of my neighbors would say..."join the club!" But I didn't get a choice in this matter (maybe that's whats really bugging me-that control thing again! LOL) It came along with the wonderful treatment I received. Some patients shave their heads right away. Some just let it fall out when it will. As you have seen through my blog, I opted for the 3 stage approach, hiding my "sickness" as long as I could, the final stage (by necessity) being the a #1 blade all around.  I was ready though...I had lots of scarves and hats and Kate even knitted a few "cancer caps" for me (as if she had nothing else to do!) to keep my head warm on cool nights.

Ya know, its funny...when I first started the "balding process", (Day+12, while I was in the hospital), I was very careful to hide my newly-shorn look from all. I had a hat or scarf on all the time. While I was not surprised by the effect...I wasn't yet used to my new baldness. I especially did not want my kids to see it when I came home. I was afraid that it would scare them. Let's face it...most of the time when you see a bald woman or one with a scarf on her head, the reality is that she has likely been through "something", and is/was sick. I really resisted the looking sick thing for as long as I could (LOL). In fact, one of the things about Amyloidosis is that you can hide behind "normalcy" for a long time...even while you are going through treatment. Despite putting up with the pain on my head from resistant hair follicles (not kidding), I was so sure that I was going to be a trendsetter and keep all my hair anyway!

Then I remembered what I had told the kids from the very beginning...when Mom looks the sickest...is when I am actually 3/4 of the way through this process and already on my way to getting better. So what am I afraid of then?? 

I don't look or act like the old version of myself right now and that is what is scariest to me...and in some ways it must be frightening for my family as well. (Anybody seen my Mom??) Before the hair loss I didn't act the same, but I felt I could hide how sick I really was if I still managed to make myself presentable. (I could put on a good front, or so I thought!) Now, besides being hairless, looking pale and full of fluid, the "Energizer Bunny" in me is also on hiatus. Some days I do feel pretty good...I can go for walks (with my scarf and mask!), water my flowers, converse with my family, and even sit at the dinner table. Other days, I sit in my favorite yellow chair in the foyer, numb (and bald) to all that is going on around me, unable to read, write, eat or speak. I respond to Del in monosyllables when asked "what's going on?"...or  "how ya feelin?" or "have you taken your meds today?" Doing anything seems like a chore. But the bottom line is that I'm not "Auntie Fu Fu" any more...a term of endearment started by nieces and nephews back in my more glamourous hair-do days!

As my nephew Ryan reminded me (ever so sweetly, as only he can) the other day..."that's OK...now you're just Auntie Chrome Dome"! (out of the mouths of babes, no?!) He's right though ...I'm not the person I was 3 months ago. (Thank GOD!) That's OK. Because I know where I have been...what I have been through...and what I will be when this is all over (65 days!). I will be better. I know where I am headed...in the right direction. I will (hopefully) have put Amyloidosis in its rightful place...remission, and be healthier and in better shape than ever before. So what if I have to be "Auntie Chrome Dome" for a while...that only makes this part of the process...different from the rest. It makes it REAL...to everyone now and not just me.