How well did God do in statistics class??

I love Christmas time...I really do. I love everything that Christmas means. Especially this Christmas. I also love the music, the shopping, the food, decorating the house. I love the cards and letters, the parties, the TV Christmas specials, and celebrating with family. I love that all my kids are home now. I love watching Elf...over and over and over. Most of all, this year I love that this past week Fred, Del and I made what will be a semi-annual pilgrimage to BU's Amyloid Clinic.( I couldn't go without my entourage!) It was time to have a series of tests to determine the durability of the (incredible) SCT I went thru 6 months ago, (even if I did have to endure another Bone Marrow Biopsy...ouch!)
For the last couple of weeks, I have had a calm feeling overall...quite the opposite of what you would expect. I cannot explain it. I suppose some of it could be that I had a laundry list of seasonal projects to keep me busy, lots of shopping, baking etc. Despite the fact that I still having all the symptoms that I had prior to treatment, I really felt like I was going to get a positive outcome from all the tests and I was not too worried. I knew that nothing they could throw at me this week could be worse than what I just came through, and whatever the outcome I could deal with it. I had truly surrendered to God and knew I could rely on his strength and grace to see me through anything.
One of the best things about these 3 days was that I was able to connect with other patients. Some new patients, recently diagnosed and who are weighing their treatment options, and other patients who are  returning for their follow up evaluations. I love that I can share with others about the incredible caregivers at BU, about the treatment I have received and to sincerely be a source of hope for their future. There is so much to learn and so much to think about as a new patient.

After 2 days of tests, poking and the dreaded biopsy, we sat down with Dr Skinner (who began the Amyloid Program  @ BU 16 years ago!). She gently reviewed the statistics with us again: Four tests need to come back negative in order to achieve Complete Remission. 45% of patients who get through the SCT/HDC actually achieve CR. That means the Amyloid factory has been shut down. (It takes several years for the Nephrotic Syndrome to abate due to the Amyloid proteins still in my kidneys.) Of those patients, about 25% have a relapse within 2-5 years and require additional treatment. (NOT even going to think about this right now!) 55% of SCT patients do not achieve "CR" and require further treatment. Treatments vary depending on lots of factors. Organ involvement, reactions to SCT and various Chemotherapies plays into these decisions. One thing is for sure. Everyone is different.
With all of this info to consider, we went back home to wait 2 days for the results. On Friday, my mom drove up from CT to sit with me while I received the call. Does God know about these statistics?? Is he considering my chances?? Not sure. But I do know he is sure about what he wants for my life. I think I'll go with his plan.

At 2:15 I got the call from Dr Sanchorawalla. She congratulated us! We did it. Complete Remission! Less than 5% of Lambda proteins in my bone marrow- which is far better than what it was prior to treatment, and indicates no further invasion. Yup...that's right...We did it, ...shut the amyloid factory down. I say "we" because I could not have done it without all of you! WE did it together. You were with me in spirit, and in prayer, right beside me...rooting for me the whole time. I could not have made it without all of you. You kept me positive...laughing...and my eyes on the prize!

Wow! I am ecstatic. Yet as I sit here, I am having a hard time putting my feelings into words. (hard to believe i'm at a loss for words right??) Part of me knew this would be the outcome, part of me couldn't believe this was the outcome, and all of me wants to shout it from the rooftops! Merry Christmas!
I barely heard the Dr. tell me that I need to make an appointment for 6 months to have all these tests repeated.
Right now I just want to enjoy the holidays with my family. I am incredibly lucky...and I am alive. Tomorrow is not just another day. We never know what tomorrow will bring and that life can change in an instant, but I know that its a new beginning for me. With new blood, new hair(OK...just a little), and a new lease on life...i'm going in...cover me!
Love and Peace to all this holiday season!
Cheryl

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

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.

Welcome Distractions bring on blog neglect !

September 13th Day +80!  Almost there...breath, pray...breath, pray...

For the faithful followers of my journey, I am sooo sorry I have not had the time to blog lately! The beginning of the school year brings lots of "assignments" for mom as well as the kids. I am just really glad that I am able to do these little projects for my kids! When I began this process, although hopeful, I really did not know how strong I would be at this point in my recovery (the un-known). And frankly, after being cooped up and tied down for the last 3 months, I would much rather be out and about doing things than sitting at a computer screen, no matter what the news is. (Do you blame me??) But I am happy to report that while operating a little slower than I did in my past life, I am able to do lots of things now. I am focusing on getting physically stronger and improving lung function by walking everyday, and lifting some weights to reinvent the muscles that seemed to have disappeared during the last 3 months. The fluid retention and fatigue is bothersome, but something I will have to deal with for a couple of years since the Amyloid proteins that are in my kidneys take so long to break down.

Had a great visit with our BC friends Vinnie and Laura last week who were up from Virginia to move two of thier 3 boys into BC dormitories! (The third one is at Emory in Atlanta...can you spell T..u..i..t..i..o..n..!!)
So great to sit and chat with them for a couple of hours!

The weather has been pretty awesome lately so we decided to venture to the cape for the day last week and check out our favorite bike trail. I wasn't sure if I was going to be able to ride that far, but we managed to put in about 12 miles anyway. First we rode about 4 miles along the shore, Falmouth to Woods Hole, then stopped for a fabulous, (and if I do say, well earned!) lunch at Phusion Grill.(You must try their Blackened Mahi Mahi Sandwich with spicy aoili! It it to die for!) Then after Hayleigh finished poking around in every store in town, we hopped back on the saddle and rode another 8 miles before "my seat" told me it was time to call it a day. Love that bike trip! It will definitely be an annual trip for us, although i'm not sure I can wait a whole year for that delicious sandwich!  I hope next time the boys can be here to join us.

This week I had another meeting with Dr. Malek,( my local hematologist), with my "entourage", Fred and Del, in tow of course.  My blood work came back with great numbers and Dr Malek is very pleased with how I am recovering. I told him I had all of you to thank for it! I will go back again in Oct and Nov to check blood work, then in December I will return to BU (kicking and screaming no doubt) for some 'revealing' biopsies.

And on the hair front...Fred swears that I have some new stubs to speak of this week...yeah! I told him that it was just a little hard to see because its coming in blond!! LOL

Love to all
Cheryl

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.

Has anybody seen my "get up and go"?? I think it got up and went somewhere!

Hi everyone...sorry I haven't been able to chat/blog lately. I have been dealing with lots of lethargy and GI issues (which I'm sure are related). Its been a real challenge trying to balance the need for nutrition and activity (of any sort!) with the need for the ever important happy nappy's. 

I'm trying to determine now what is "normal" and what is "to be expected" at this point in my recovery. Lately I feel like my day is one big freakin' Rest Stop! I get up, make the bed, rest. Walk downstairs, rest. Go back upstairs...cuz I forgot my meds, rest. Shower, rest, etc...  Not lots of energy in this girl right now. Perhaps my "get up and go" decided to go to Cape Cod without me?? Can't say that I blame it...I'm not much fun right now:)  Keep it down Del...I don't need any comments from the peanut gallery/entourage...

So I made a trip to my local hematologist last Friday and that went very well. Dr. Malek  trained at BU in the Stem Cell program for 6 years with Drs. Seldin and Sanchorawala. I am thrilled that not only is he is super knowledgeable about Amyloidosis, but he also has a great personality. He said I am doing very well (despite my whining) and that I need to give myself more time (3-6 months!!) before I will really start to feel better. WHAT??!!
I have lost 20 lbs in the last 2 weeks just in fluid alone (!), and my platelet numbers are over 200,000(yeah). Red and White blood cells haven't changed much, but I'm told they need more time. (I'm thinking they have about 93 more days to get with the program !)

Of course Dr Malek also reminded my about what my body has just been through over the last 6 weeks (like I needed to hear that!) and that I needed to take baby steps (literally) to get back in shape. I'm not to lift any more than 3 lb weights and I can't walk any faster than 3 mph. They still don't want me getting over-heated or breaking a sweat. (Like I'm gonna break a sweat with a 3 lb weight -ha !) Still I have been trying to do a little bit everyday (Del, my ever faithful entourage, babysits me while I'm on the treadmill to make sure I don't go over 3mph)...when and if my GI track allows.

Food is another issue altogether. At this point I am not "neutropenic" anymore, which means I can begin to introduce some other foods if my GI track will tolerate it. I still have to be very careful of bacteria in and on foods and eat fruits and vegetables that have thick skins like oranges, bananas, melons, or potatoes. However, the problem is my GI track is still very much destroyed due to the chemotherapy, so it's hit or miss. I have tried to introduce some new things but right now nothing seems to agree with me so I end up with severe stomach cramps and constant "issues"  (do I really have to explain myself here??)

They told me before all this started that after my appetite comes back I might not even like things that I used to love and that I might actually like things that I couldn't stomach before. Taco Bell...here I come!! But seriously...I don't even have a desire for chocolate (OMG!) or red wine anymore...whats up with that??? ( I must be really sick!)

I am dying for a big salad, but lettuce is still not on the list. Tried ice cream and yogurt, but still lactose intolerant, tried some cooked veggies...not so good. So I guess I'm just gonna wait another week and try again. (How's that for being patient??) Looks like its eggs and plain pasta for me again this week.

My family, on the other hand, has been the recipient of some delicious culinary creations, thanks to friends and neighbors who have been dropping off dinners for the last month. What an incredible help to our family. (Thanks Julie for orchestrating all that!) We have also received "dining dollars" to be used for take-out or ready-made meals from our friends who are logistically too far away to cook, but who also wanted to help out in some way. I cannot thank you guys enough! I am always brought to tears when I think about the loving hearts and hands that have been extended to us during this health crisis. The cards, emails, prayers, books, flowers and blog posts bring sunshine to my days and fill my soul with hope for the long road still ahead.

Love, Cheryl

Still no sign of hair on the horizon though...mmm

97 days and counting...

Look...I never professed to be a patient person. Especially when it comes to myself. I have always had certain expectations and standards to live up to. So what gives?? I gave it (Amyloidosis) a year...I got through the Chemo and Stem Cell Transplant...can I please have my life back???

I guess what I'm really saying is that this "100" days thing is a real challenge. I know...you're thinking, "but it's only been 3 days!" Except that what I am thinking is, "it's been a whole 3 days! Why am I not feeling better and stronger??" Can't help myself:)

Yesterday was a challenge...was feeling a bit nauseous, not sure why, but I managed to walk on the treadmill (still can't bring myself to walk outside) for a whole 20 minutes (whoopee!). Still having trouble with my vision so its hard to stay focused on my book for any length of time. (whine) Tried to eat one of my favorite Easy Dinners (Farfalle with Chicken in a Sun dried Tomato Cream Sauce - yum) that I put in the freezer before I left...maybe I should have waited:( (whine, whine) Can't even keep my eyes open long enough to watch a whole movie! Going back to bed seemed like a good idea:)
As I say to my kids sometimes...I need an attitude adjustment...now! (Either that or I need to start taking my Ativan again!)

Today I found one...on my own blog!!
"Life isn't about waiting for the storm to pass...its about learning to dance in the rain."
This is my quote for the day (and maybe for the next 97 days!). It reminds me that I'm still in the midst of a 'storm' and have quite possibly a long way to go before it has passed. Its really hard to be patient and wait for my stem cells to grow and mature. I know that I am tired and weak, but I must learn to live as much as I can within each day that I have. It may not be the way I lived each day before, but it's what I am capable of at this point in time. I have to learn to be happy with what I can accomplish at any given moment...and that it's OK if it's very different from before....for now.

Still an optimist…just venting
As a wise uncle used to say…”this too shall pass”
Love Cheryl

Moving in one direction, Forward....

Great news...I was discharged from the program yesterday! What a day. Del and I arrived at the Stem Cell Suite bright and early to avoid sitting in traffic. After labs and a full check up by Dr Seldin and Dr.Mehta, they confirmed my graduation.

Hayleigh made another tray of mini chocolate cupcakes for the staff. (this is the third one!) She had made a tray 2 weeks ago and they were gone in a flash, so she made another tray with 4 times as many for this past Wednesday and they disappeared in 10 minutes. So in celebration of my last day, she made even more cupcakes which we brought with us.(and no we didn't snack on the ride in!) Everyone in the Suite was thrilled of course with the "breakfast bars" and they didn't last long. If they weren't chocoholics before...they are now. (The Conways taught them a few things too while we were there!)

In some ways yesterday was bittersweet as well. While thrilled that I was being discharged, I will miss all of the new friends who have been by my side since May. I can't wait to see them again in two weeks...mmm, what should we bring them next time?? In this picture: Mary Kate, Jane, Anthony, me and Jim. Unfortunately missing from this picture are Teresa, Janet, Mona and Aura.
 
We also got a chance to visit with Brian and Tina, a new patient and his wife whom we met during the evaluation period in March. Brian is also an ironman, and ultra marathon competitor who was diagnosed with CLL and Amyloidosis. He is just beginning his Stem Cell Transplant program, and with much the same gusto and optimism as I did.My prayers will continue for them as well as Robert and Martha, Cila and Steve, as they continue on their individual journeys.

After hugs all around and a thankful, yet tearful goodbye, Del and I gladly made our way back home.
Lots of instructions to process as I begin 100 days of healing. (3 pages!)While I am recovering at home I will need to continue to monitor my temperature (anything over 100.5 requires a phone call to hematologist), my fluid retention, my blood counts, and my blood pressure. I cannot have outside visitors unless they have been immunized (no live virus'), no pets, small children, and I have to wear a mask in public places (should I even dare to venture out) to protect me from unknown lurking bacteria and diseases. The good news is that I can begin to exercise as I regain some energy (and Red blood cells!) and introduce thick skinned fruits and vegetables (Yeah!) to my diet next week (as tolerated!). I actually walked a 1/2 mile on the treadmill on Thursday and 3/4 mile Friday! I know that doesn't sound like much, especially for someone who is used to running several miles a day, but for now I'll take it. Baby steps...all the way to the finish! (I think Hayleigh is starting to get nervous...I'm not sure she really believed me when I said we would be running a marathon together someday...she obviously doesn't know her own mother!!)
Phase 3 will continue, 99 days and counting, but first I need a nap...:)
Love to all,
Cheryl

Home Sweet Home!

Another day, another milestone, another answer to prayer! Monday, day +18, we got some great news at the Stem Cell Suite. I was able to get my central line out! Yeah! Dr. Mehta made it painless! Maybe he can do my next bone marrow biopsy too!

 We also moved out of the apartment and back to Easton. What joy to be able to come home, see my kids, and sleep in my own bed. Its been a long 5 weeks. Monday the doctors told me that my blood counts looked a little better than Friday and that they expected them to continue to climb, although maybe not quite as fast as I would like. Instead of taking the journey one day at a time, they are encouraging me to take it one week at at time.
As I sat on the edge of my bed, taking it all in, there is a part of me that absolutely cannot believe all that I have come through, and how well I have tolerated everything (OK maybe not everything...but I managed to get beyond it!) Now on to Phase 3 of the treatment. The marathon isn't over yet...this is when I have to dig deep and find the strength deep within myself, trust all my treatment/training so far, and finish strong.
My fears throughout this process have been two-fold. First, my fears were related to the treatment process that I had to go through. As you have all read in previous blogs, although I educated myself about what my body would go through, I was still petrified. I learned to process each step, each day, and ask God for the courage to get through each one. And he did.
Secondly, my fears have been about the end result. Will this treatment eradicate the Amyloid factory that my body had built? Will this treatment put me in complete remission...and for how long? These are answers that I will not have for a long time. But I cannot let these fears consume me. I must continue to believe, and have faith in my strength as well as the power of Gods healing love. One of my favorite songs reminds me daily to surrender any fears I have, and trust in Him:
"Whenever God shines his light on me
opens up my eyes so I can see
When I look up in the darkest night
I know that everything's going to be alright.
In deep confusion, in great despair
When I reach out for him, he is there
When I am lonely as I can be
I know that God shines his light on me.

Reach out for hime, He'll be there
with Him your troubles you can share
If you live the life you love
You get the blessings from above
He heals the sick and He heals the lame
says you can do it too in Jesus' name.

He'll lift you up and turn you around
and put your feet back on higher ground

Reach out for him, He'll be there
with Him your troubles you can share
You can use his higher power
in everyday and any hour
He heals the sick and He heals the lame
says you can do it in Jesus' name."

Van Morrison, Avalon Sunset 

Tuesday, Day +19, Del, Fred and I returned to BU Med Ctr to attend the Amyloid Support group. This was a great opportunity to meet and talk with patients who are at the beginning of the process patients who have been through the process, and even those who have been through the treatment several times. I look forward to attending these meetings if for nothing else than to give others hope and strength as they move forward through the treatment process. But, it was so great to return home and have a happy nappy on my own couch! Not much energy for blogging...very tired

Yesterday, Day +20, we returned to the BU Stem Cell Suite for more labs and follow up care. Although still very weak and tired, I returned feeling renewed and more refreshed after sleeping in my own bed for 2 nights. More good news...I am being discharged from the treatment program on Friday. Yeah! Although I will be coming in for follow up visits periodically. I will not have to come in daily. I will be continuing my recovery at home, monitored by my local Hematologist/Oncologist, who will be in constant contact with my team at BU. Slowly but surely over the next couple of months, I will regain my strength (as well as my hair I hope!)
For the next 100-120 days I must continue to be vigilant about germs, bacteria and diet. This is the crucial period during which my numbers will continue to improve. Lots of discharge instructions from Anthony, for me and my entourage.I'm all ears:)

Patience...breathe...pray...and grow.

Time for another nap...
Love to all!

Welcome to 7 EAST!!

The adventure continues....So I guess its pretty safe to say that I still haven't wiped the smile off my face since last night. I was really actually looking forward to returning to the Stem Cell Suite today to reconnect with all my friends and caregivers. These wonderful people become an extension of your family in no time.
Del and I returned to the hospital today for what we are hoping is one of the last times. I almost cannot believe it. I am now Day+15. An easy day by this past week's standard.
Speaking of last week, I guess it's only fair to continue where I left off last night.(see previous blog)...

Although my little "detour" is well behind me now in terms of time, it is still something I must think about everyday because I still have so much time ahead of me in terms of waiting for my new blood to mature enough to protect me from bacteria (or anything else for that matter) before I can resume my "life".
When we left off yesterday, I was finally admitted to the hospital and they took us up to 7 East, the hematology/oncology floor. We were ushered into the room by Molly who would be my nurse throughout the night. I could not have been in more capable hands (by the way Mayo's...she hails from Cincinnati!) I was absolutely exhausted at this point and wanted to do nothing more than just go to sleep.
I have not spent many nights in a hospital other than when I had my children so I really don't know what to expect....other than sleep. Sleep is after all so important to people, especially sick people. It allows the body to rest and is crucial to healing. However, someone forgot to tell this to the folks on 7 East @ BU Medical Center!  After getting settled in my room, Del returned to the apartment and Fred attempted  to settle in to a recliner in the middle of my room. It would not be for long. As my fever continued to come and go all night, the wonderful nursing staff monitored my vitals, cultured my blood, (I tried to tell them I had plenty of culcha...but  they did it anyway!) and made me as comfortable as possible. In other words, they took wonderful care of me...but sleep was elusive. One thing became very clear to me though. This is exactly why BU Medical Center's Stem Cell Program has been so successful when done "outpatient ". A lot of folks were surprised that I would not be hospitalized for this whole treatment program. BU has always maintained that patients recover faster when treated outpatient, rather than having to stay in the hospital for a couple of weeks. They have years of research to document this. Makes perfect sense now! The hospital is always right here if you need it, (as I did) but you are much better off going back to your own place each night to rest.

Monday, Day+11 came very quickly and the monitoring, culturing ....and fevers continued. I was able to catch a few naps throughout the day which was refreshing. Doctors still couldn't find the source of the fevers but put me on a very intense regime of antibiotics in an attempt to "stem" any infections. Now in case you didn't already know...besides a research mega center, BU Medical Center (also called Boston Medical Center) is a teaching institution. Fabulous right?? Absolutely, except when you open your eyes in the morning, and you are looking into the eager, stethoscope-ready  faces of 20 residents, medical students and fellows...and you haven't even done your teeth!! I wanted to crawl under the covers until they all went away!
The best part of my first day came shortly thereafter when a gem named "Teresa" waltzed into my room. Teresa introduced herself  and announced she was my "hospitality assistant" for the day.! I thought WOW, I could get used to this! Teresa's job was to keep me fed and nourished during my stay. She would make me anything I wanted as long as I was there...neutropenic diet of course. Unfortunately for me, I really had no appetite and everything tasted like cardboard or metal. Plus my fluid retention was getting worse by the hour so I was very uncomfortable. Scrambled eggs were (and are) becoming my best friend.

Tuesday, Day +12, the fun continued, same routine, different day. I was very weak, very warm, very swollen, and now covered from head to toe in a lovely rash!! Overnight my body began to develop an allergic reaction to the antibiotics they gave me. And fortunately for you...that is the only reaction that I am able to blog about...if you know what I mean! (TMI- too much info!) On top of all of the above....as my Hematologist, Dr. Seldin was examining me first thing that morning...he very nicely says to me..."you know your hair is falling out, right?" And sure enough...there it  was...all over my pillow...you were right, Anthony...it was ALL coming out! (While I was able to hang on to my hair than longer than I originally expected, I was ready for this side effect and it was the least of my worries! Nothing a pretty head scarf can't handle) But my numbers were not improving as fast as they wanted so they decided very late in the day to give me a boost with some red blood cells.  I attempted to sleep...with no more answers than when the day started. To say this was testing my patience would be an understatement! LOL! I felt like I was going backward instead of forward...(Can I please go home???)
 

Wednesday, Day+13, Today was literally a breath of fresh air. Besides the Starbucks coffee that Fred brought me at 7 AM, I awoke today with my body feeling the boost of fresh oxygen from the blood they gave me throughout the night. However the fevers continued...and so did the testing. (We are here to find answers after all)  Now I am well aware that when you "culture" blood,  you have to give it time to grow, but here I was day after day, laying in bed, getting more bloated (I never said "super-size me"!!), redder, and increasingly frustrated. At 5o'clock I decided to do some laps around 7 East (complete with my mask, my ever-so-lovely hospital johnny and Del by my side. We got to lap 18 and I decided to try to make a getaway from the ward.  When I felt that Del's attention was diverted, I made a bee-line for the elevators, and guess who is walking towards me...Fred! Bagged! They dragged me back to my room and put me back in bed. Can't blame a girl for trying! 

Thursday, Day +14 We began the day much the same as the day before...including the Starbucks Coffee! I was really feeling pretty good and had slept a whole 4 hours during the night!When the doctors came in for rounds I was very hopeful that they would see things my way this time. You see...not everyone has an entourage like mine but I was determined to convince them that we could manage this whole fever thing on an "outpatient" basis and that lying around all day in a hospital with lots of really sick people was not contributing to my progress. Needless to say, I presented my case to them and thankfully they agreed with ME. At this point since all of my blood cultures were coming back negative, they decided that the infection causing the fevers must be viral not bacterial,and that this pattern could continue for several weeks. (!!) They also took into consideration the fact that I had the entourage of dreams (Del & Fred are the talk of the stem cell suite- if only everyone could have caregivers like this, it would make their jobs so much easier.) So at 10:30AM  they told me I would be discharged today with strict instructions for fever and rash control, etc. So Fred and I set about pulling all of our belongings together to get ready to leave...I am ecstatic! Around 11:30 AM, we call Del, who is now enjoying a well-deserved day off: power walking the Esplanade, shopping and reading to let her know that we will be returning to the apartment at some point, and that we were waiting for them to process the paperwork. Now remember...I already told you I haven't spent much time in a hospital...so when they said they had to do some paperwork...I'm thinking "discharge instructions". By 2:30 PM I was starting to get a little worried. They kept coming in to do my vitals. Mind you...Me, my port and I were sitting on the side of the bed, fully dressed to go, with a pen in my hand. (Just how much paperwork is involved here??) Fred was trying desperately to keep me calm, but I was getting a little nervous that they had changed their minds and that they had found something in the latest blood draw. Besides, my nurse Kim had made the comment that morning.... "I hope its before 3 o'clock". How long can this go on you ask??? At 5:00 PM I am beside myself and no one had come in to let us know anything. Kim continued to tell us that the doctor's paperwork needed to be completed. At 5:30 PM...7 hours after they have told me I would be leaving, Kim finally came in with the "paperwork". I could have cared less what was on those pages! I signed the last page and Fred and I practically ran down the hall for the elevators. Free at last...free at last! (a glass of wine would have come in handy right about then) But I had to settle with whining instead !
Now before I end this, I must tell you that my care on 7 East was exceptional. The nursing staff, aides, hospitality assistants, etc. were truly caring and professional. They made my stay (hopefully my last!) the most comforting I could have possibly have asked for and I am lucky they were there for me.
As Paul Harvey always said..."So now you know the rest of the story...".
I feel like I am finally moving forward....excited to be back at the Stem Cell Suite and definitely ready to finish this treatment program. I miss my kids terribly and cannot wait to move back to Easton.
Del and I had a wonderful reunion on Friday, Day+15 with Jane, Jim, Mary Kate, Teresa and of course, Anthony, and left with improved blood counts in hand, Rx instructions for the weekend, and great hope for Monday's appointment.

I know this chapter of the blog is long, but I wanted you to know that all is well...I am strong and ready for the next phase. I could not have come this far without all of you! The cards, letters, prayers, emails, and blog comments keep us energized and laughing. It is so comforting to know I am not going through this alone...that you are along for the ride!

Have a great weekend!
Love, Cheryl

Heartbreak Hill Ahead

Hello again...let me begin by saying that I am really sorry that I have not been able to blog for a while.I neglected to give my entourage "blog access" (this could have been subconscious on my part). I was always going to show them how to do it, just in case , but really thought I was always going to be strong enough to do it myself. Chalk it up to being optimistic. I just returned to the apartment after 5 days in the hospital. I have soooo much to tell you. I have just had a warm bath and am relaxed and happy. I feel good. Del is trying to entice me with decadent neutropenic food so I will keep this brief for now. Here's how it all started...

I always knew this journey was going to replicate one of my marathons...I just wasn't sure which one. Now I know. Boston  Throughout this process in my heart I always knew there was a strong possibility that I would end up in the hospital for a period of time, but I also was very determined to belong to the small percentage of patients who never had to become "inpatient" (and this surprises you??) Unfortunately I hit Heartbreak Hill Day +8 on Friday. We are all in the stem cell clinic and my insides were on fire, I have lots of pain and abdominal distension, my legs look and feel like tree trunks (severe edema), and my feet burn every time they hit the floor...(you cant' believe how similar this is to the actual race!!). All day I cannot get comfortable.They do lots of tests and cannot determine the source of the pain. Side effects like this are fairly normal (and expected) at this point in the treatment. OK...so it was probably one of my worst days so far. Breathe....pray....breathe....pray. They send us home at 5:30 with strict instructions for monitoring (like you had to tell my entourage that!!) and we went back to the apt.  It was a very long night but I woke up Saturday feeling somewhat better...I take a deep breath. It is now Saturday, Day +9. We go to the hospital for my Growth Factor Injection and some platelets. Breath....pray......breathe...pray. I have a good day, still uncomfortable (fluid balance is way out of whack), but pain is gone and I am actually starting to feel stronger. I've almost made it to the top of the hill, through the most crucial days of this process. Sunday Day +10, (I think I can see the gates at BC!) I woke up feeling even better than Saturday. Its July 4th. Del and I go to the hospital early (just a quick growth factor shot today-Yeah), anxious to put this aspect of the day behind us. Fred has come in from Easton to switch off with Del for the day, and Del and Steve are going to spend the day walking around town and enjoying the July 4th festivities. (can I please go????!!!)
My plan is always of course to just be right now, but I was excited for them to go exploring and enjoy the beautiful yet very hot day in the city. I'm going to take a warm bath, have a nap, read, relax and just be. So Fred and I are relaxing in the apartment (world cup soccer anyone!!!), I had my bath and laid down for a little happy nappy about 2:30.  When I finally woke up about 4:30-5 from my nap, Fred came in to check on me and was immediately alarmed when he touched my face. He had the thermometer in my mouth so fast I didn't even have time to protest (OK so sometimes I gave them a little push back! Did they really think I was never going to give them a hard time??)
Now at this point I should probably tell you that part of the "strict instructions" are that if my temp should ever reach 100.5 that they should call the hematologist-on-call right away. When Fred pulled the thermometer out of my mouth it read 101.5! He runs to get his phone while I try to untangle myself from the covers I have been under. Of course I try rationalizing the situation by telling him that I probably just need fluids and that I must be that warm because I was under a cozy blanket and I just need a few minutes for my body to adjust.(no way..I'm not going!!) Fred is of course having none of this and is running around the apartment putting things in a bag. I am sitting on the bed drinking my water and trying to stay calm while we wait for the hematologist to call back.  After about 10 minutes the hematologist calls back and says we should head into the hospital...news I am not very happy with (remember....I was never going to be "inpatient"!) Fred takes my temp one more time as I am angrily throwing some things in a bag (why prepare in advance for something that is never going to happen right)....It is now 101.9. Out we go...Fortunately for us, all of the state police are lined up along Mass ave in front of Symphony Hall to escort the Boston Pops to the Esplanade for the big July 4th celebration. Sensing that they were just a little "preoccupied", lets just say it took Fred less than 3 minutes to make it all the way down Mass Ave to the BU Emergency Room door. We get inside and find the triage nurse who once again pops the thermometer in my mouth...103! I'm kinda not feeling so good right now....can I stop running now???
I have so much more to tell you, but my bed is beckoning me...I am soooo happy to back here tonight. Breath....pray....breath...pray

Love to all,
Cheryl

How many days have gone by???

I can't believe its been 7 days since I got my stem cells back! Where have i been? Oh yeah...in healing mode ...and in a well prescribed regime of anti-nausea, anti-viral, anti anxiety (what ever would make them think I would have have that??) meds that have allowed my body to rest, relax, and begin to slowly decompose from the inside out. This is a good thing remember:) As of today the high dose chemo has erased my blood cells to nadir...0.  No WBC, barely any platelets (although they did give me a boost of 2 beautiful red bags yesterday) and RBC almost non-existent. Yet here I am blogging for a few minutes because if I don't do something, Del and Fred will make me walk around, or breath in and out of my "incentive spirometer". They want me to breath in and out of this machine 10x per hour to keep my lungs inflatable. How sweet...and full of incentive!
Now for the next couple of days I have to be very careful so as not to expose myself to any bacteria, any spike in fever is a bad thing and it means I end up in the hospital. Not gonna happen on my entourage-watch...i can tell you that! Freds got that sterile thermometer in my mouth every hour.
Del got to return to our home for a day to regroup with the boys and do some girly stuff with Hayles. In fact I think they both got their hair trimmed today! Not that Im jealous mind you...other than they probably got to go out for a fab lunch too!
No pics for me to post today...not because I've lost anymore hair, just because
I'm too damn tired to download the camera. I spoke with Anthony about that today as a matter of fact. This morning I was quite proud of the fact that I'm still sporting my Annie Lennox-Hallie Barry doo, but he smiled as nice as could be and said that by this time next week I would probably be more accepting of my hats and scarves:) I told him...just as sweetly, that my hair follicles are probably as stubborn as I am. We laughed...
as we often do.
Tomorrow will be another wonderful day with the staff at BU Medical Center. I am so lucky to have them in my life!
Love to all,
Cheryl

The Return of the frozen Stem Cells!

What an incredible day! I was so excited to get to this point, yet I pretty much managed to sleep through almost the entire day! What's up with that?! Well, when I first got there, Nurse Jane got me set up in bed, complete with an IV for fluid and meds including benedryl, ativan, and antibiotics. All to keep you calm, comfortable and virus free. Then she monitored my heart and BP all day. Sandy, Dr.Guegetta and Dr Sloane then saw to it that my Stem Cells (three bags - about 7 million! were slowly returned to me over the course of the day.) Unfortunately what they did not have was nose plugs for everyone in the room. I was unable to smell or taste anything at all after high dose chemo the day before, however, the entourage in my room had to bear the ungodly smell of bad roasted garlic and creamed corn... the genuine sum of my stem cells and the lovely preservative that they use to keep it safe until its eventual return to me.

I passed with flying colors! A long day and a long evening, but I feel once again complete. Now the waiting begins. The high dose chemo will, for all intents and purposes, kill off all of my current blood cells and platelets by next Thursday or Friday. However, my new stem cells will be growing slowly but surely to more mature platelets and cells to replace those that had to be destroyed. Its a delicate balancing act of science and the miracle of new life inside my bone marrow. Truly amazing part of this adventure.

I'm very tired now...and probably will be for several days (so they tell me) but I will try to keep you posted on the comeback journey. They have told me that all is going well so far and I couldn't be in better hands.Thanks for all the continued prayers and cards. They make my day!
I am going out of my mind not being able to do a whole lot other than sit around, however it seems I don't have much energy for much else right now.

Life isn't about waiting for the storms to pass...it's learning to dance in the rain. (vivian greene)

There just never seems to be a right time to blog after treatment...especially the treatments I have had the last couple of days.What can I say, these were two of the toughest days so far.
Other than getting to sport another sassy new hair cut, holding ice cubes in my mouth while being infused with a highly toxic dose of chemotherapy was the best and worst place I could possibly be. I hope you can understand where I'm coming from. The BEST place...because my entourage, including Hayleigh, walked me through the painful part by helping me to stay focused on the end result (no mouth sores), laughing and strong to the finish.I also received a 3 lb box of chocolates from my sister-in-law Deb and a huge get-well basket with movies, candy and popcorn from Beth, Dana, and Liz (the Malden girls) to look forward to  when I get home.If I could just get out of here!!

                                                
The WORST place...because I know all too well that the high dose chemo will take me to all new depths of pain, and discomfort over the next two weeks..there is no avoiding it. In truth, the healing continues and it's the only means to the end that will enable me to go on living .




But guess what...I did it! I made it through...and tomorrow is the day I have looked forward to for the last 5 months, my second birthday! Tomorrow I get my precious stem cells back. I can't wait!



Tomorrow is called Day 0. I will be hooked up to an IV and my previously frozen stem cells will be slowly reinfused over several hours. Unfortunately the preservative that is used for the cells smells like rotton garlic...for 3 whole days! I won't be able to smell it, but everyone else will (LOL!) My entourage may be bribing each other for breaks throughout the day.I'll be sure to get pics for both your and my entertainment.I'll be heavily sedated for most of it and will sleep most of the day away.But I can't miss these moments... they are priceless.

Many thanks for all of the delicious dinners that have been so graciously provided to my family in Easton. They are a life saver for those at home. Please keep sending the great jokes...they keep us all laughing, and please keep the prayers coming. He is listening...I know it for sure:)
Tomorrow is another day and we will endure!
Love, Cheryl