Good news for the Me and the Celtics!!

And we're off...Round two of chemo began this week...and lucky me, I managed to coerce my BFF and veteran cancer care-giver Jennifer to fly up from Florida to play chemo-companion, not just for that day, but for 4 whole days! What a treat! Chemotherapy aside...we had a relaxing and memorable visit! And being the gracious hosts that we are, we even let her wear her "Orlando Magic" shirt during games 3 and 4 of the series with our beloved Celtics.Not that it helped them, but she felt better wearing it:)!

  Tuesday (treatment day) just happened to be another gorgeous May day (103 degrees!) and....we were inside for the better part of it! (whine, whine!) Sorry, but this is my favorite time of year, so spending 2 days of week in the 'incredible' BU Medical Center with an IV in my arm, does not make this mama very happy.That being said, I did meet some more pretty terrific people while at the hospital this week.
Although this pre-treatment phase is outpatient, you have the chance to meet other patients in the waiting room, as well as in the stem-cell suite. Since no two patients are at the same phase of their "cycle" , you get to talk to folks at all stages of treatment. And
while everyone's amyloid deposition may be different, and treatment protocols vary based on diagnosis, you can still get a pretty good idea of what is in store for you. I can't explain it...but in a strange way, it makes it a little less scary.We are in it together...and ...we are there for each other...nice.  

 After another successful infusion of my bi-weekly chemo cocktail, Jen and I made tracks for sunny Newbury St. and found a delicious outdoor french bistro to grab a bite to eat (the "upside of chemo"!) before heading back home to Easton.
Two days of steroid-induced activity was quickly followed by a major crash landing on Thursday, finding me in bed for a 12 hour nap! That was certainly a new one for me!
Then Friday, it was back to BU with "Freddy, my lo-ove" for another "happy hour". I also got some pretty good news this week...after my first cycle of chemo, my numbers have improved! This means the Velcade is working to attack the amyloid proteins, and it is also a good indicator that my system will respond to the future Chemo and Stem Cell Transplant (SCT). This is an answer to my prayers! Now if my eyeballs would return to normal (blepharitis- just another side effect!) and they would just tell me that I don't have to come back next week...I'd be real happy!

Only a few minutes to rejoice on this fabulous news though...after a quick trip back to Easton, it was time to concentrate on final preparations for Bret's Senior prom and Hayleigh's freshman dinner dance.  These are truly welcome distractions that are not to be missed, and definitely help to make "treatment" a distant memory. Plus its a great way to channel all the energy of the massive steroids I just received!
Celtics in...Magic out! Chemo in...amyloids out...I'd say that's a win-win this week!

It's so great hearing from all of you and I cannot thank you enough for all your prayers and encouragement! They are a bright spot to my day and keep my spirits in the right place!
Love,
Cheryl

Finding the Upside to Chemo....

There is a way...1) look beyond the treatment, 2) plan something to look forward to later in the day and 3) bring some great chemo-companions along for distraction!

Week 1 of "pre-treatment" went pretty well. Of course I had some exceptional company to help keep my mind off of what was really going on each day. While Fred spent the better part of Tuesday keeping me pre-occupied, my dear friend Karen spent all day Friday in the chair by my side, keeping the nurses on their toes and making her expectations for my care well known to all.  After spending all day in the hospital we high-tailed it out of there to try and capture what was left of the sunshine. We headed over to the wharf, found a seat over looking the water at Joe's and promptly ordered our first Lobster Rolls of the season. Ahhhh...chemotherapy, uninterrupted conversation, fresh Bar Harbor Lobster Rolls by the water, and warm sunshine...does it get any better than that??! OK... maybe a margharita would have been a bonus but that was not to be:(

Side affects are minimal and manageable so far. The steroid keeps the fatigue at bay for the first couple days (actually I have to take something called Ativan to help me sleep and keep me from organizing my house and everyone else's on the street.)..then the third day my energy level drops alot but I have the next treatment day to look forward to - which will re-energize me...starting the cycle all over again.

Unfortunately the side affects are cumulative and get a bit more intense with each visit. The usual indigestion, nausea is expected but tolerable. My equilibrium is a bit off and besides the doorways in my house (who moved them??), the banana stand at Hannafords was an unfortunate victim (which Hayleigh thought was hysterical! Can u blame her?) I certainly gave the guy in produce something to chuckle about that night.

I had a fabulous Mothers day, with surprise visits from Nana, Greg, Kris, and their girls, Kate, Mike and Henry. Other than an ever so scary "roller coaster episode" in the morning, during which Fred wasn't sure if he should hold me, or run as fast as he could in the opposite direction, we had a relaxing day. Fred ended up taking all sharp knives and hot liquids away from me for the remainder of the day just in case. Another good reason to laugh for sure.
I think that's the key here...to keep laughing. It's a great tool for healing and coping and it certainly beats the alternative... so I'm going with it!

This Tuesday began week two of pre-treatment and my entourage consisted of Fred and Nana. This was really special, since mom was finally able to see first hand the exceptional facility where I will be transformed and meet many of the awesome team members who will be following my care from beginning to end. It will definitely make it easier for her to visualize things as we get farther into treatment and I was so glad that she could be there share in this part of the journey with me.

Friday will mean the end of round one and I am looking forward to it for lots of reasons. Besides getting to spend the "I.V. hours" with my incredible husband by my side, after treatment we will drive down to Fairfield Univ. in CT (of course I'll probably be sleeping!) to bring Shane back home for the summer, visit with Paul and Margaret for a few bit, and if all goes well, to enjoy dinner with Del and Steve on the rebound. The second half of the day will certainly make the first few hours much more palatable. Then again...the second half of these days...always is!

Many thanks for all the notes, e-mails and prayers as I begin my trek. Your words of encouragement and hope are incredible, and truly help keep my spirits on a positive track.

Love to all,
C

Did I mention that I love roller coasters??!

Hi Everyone!

It's been an interesting 2 weeks since I have had a chance to sit down and vent. Lots to do around here to get ready for the "treatment" phase. First and foremost, I would like to thank everyone who has reached out to us - either by posting comments, prayers, phone calls, cards, letters, and of course the well traveled "USS Friendship Life preserver" that I now have in my possession! I cannot even begin to express how much your support means to me and my family during this difficult time. It definitely brings a smile to my face, (and yes,sometimes tears) to know how much you care. It's hard not to feel "alone" at times in my thoughts and then I will get a card or comment or email, and know in my heart that you are with me too. Keep the jokes coming...because if you don't have any good ones, you'll have to listen to mine (which really aren't very good!). The kids have expressed their strength, courage and acceptance with us over the past few weeks, now that they have had time to process what the months ahead will mean to all. They are encouraged by my will to deal with all of this, but most of all by the outpouring of support from all of you, their closest friends, and God...who will be there for them through it all.


Fortunately, I have had a lot of time to reflect during the last two weeks as I began to prepare our home for my little hiatus in Boston...I think I was trying too hard in the beginning to separate my mind, body and spirit in an effort to process and compartmentalize this "mid life challenge"...but realized I can't... and shouldn't. You would think I would know this after all my years of marathon training! You definitely need to draw from all three to survive any marathon. God has made sure that they are all wonderfully connected and it's that strong connection that will allow my mind and spirit to thrive when my body isn't able to keep up...or for my body to take over when my mind takes a walk on the wild side(only sometimes!)or spirits are numb. Your thoughts and prayers have helped me to find peace with all of it.

We have had lots of diversions in the last couple of weeks, which is a good thing. Cleaning, cooking (stocking my own freezer for a change! LOL), organizing closets (winter is all but gone-yeah!), and getting everyone immunized against potential viral threats to my soon-to-be-weakened immune system. (That was sooo not a fun trip to the DRs - even with the promise of an apres' visit to Cheesecake factory!) There have been the usual track meets, birthdays celebrations, confirmations, and school projects to keep us busy.  We had a surprise  reunion in the North End with Jim, Susan, Paul and Margaret complete with a fabulous dinner at Antico Forno and lots of laughs. We also finally got around to giving Hayleigh's "crib" (bedroom) a teenage makeover that got put on the back burner last year (mmm... wonder why?), enjoying spring spruce up around the yard (my personal favorite!), and of course getting Bret ready for prom season (he has 2!) and graduation from High School(!!). We are thrilled that he has decided to attend the business school @ Quinnipiac University, a school that he has felt a special connection with since the beginning of his search. It is in Hampden CT so he will be only 1/2 hour from Shane at Fairfield U, and 15 minutes from Auntie Del and Uncle Steve in Middletown, CT.

Speaking of Auntie Del...part of my preparation time over the last two weeks has been spent figuring out how Fred and I can sneak away for my fabulous 6 week vacation...OK...so it's for my chemo and stem cell transplant...details details! (not the first time my mind has had to offer me a reality check!) I have to tell you that Fred and I are so blessed that "my sissy" Del has graciously offered to take a leave of absence from her job for several weeks to play tag-team with Fred as my "personal care givers"...which the hospital requires 24/7! Not an easy task! Of course you know me...that term "personal care giver" just wasn't doing anything for me ...so I offered them the new title of Cheryl's Entourage...which they gladly accepted. (Would you deny someone on Deximethozone (think of Prednisone x 4) anything anyway??!) We have figured out a pretty good schedule moving forward so that one person will be by my side at all times, giving the other one much needed respite from my ranting, ravings and general demands over the course of each week. (After 25 years with me, Fred doesn't have a choice, but anyone wanna take bets that Del might be regretting her decision after 2 weeks??!We'll just see who will be whining then! She might need a few cards and letters of her own -LOL)  They will be monitoring my meds, meals, never-ending sarcasm, temp, transportation and basically anything else I care to bother them with for the duration of our time in Boston and beyond. Throw all the wonderful Dr's and nurses at BU Medical Center into that mix and I am in the best hands!

Being away from the kids for that long is going to be very hard, but knowing that family and friends have generously offered their assistance to us during this time which has brought me great comfort. While Shane will be back from college and working at his new internship @ Covidien, and Bret will have already graduated from HS, working at Hilliards (ice cream anyone?) and the Comcast Center, Hayleigh will still have several weeks of school in June, not to mention final exams, so finding the right mix for providing continuity and support at the homebase was crucial. We are hopeful that there will be time for them to visit us in town on certain days so they can witness first hand this incredible healing transformation.

Day 1 of Chemo Treatment was yesterday. WOW am I glad that is over. You dwell on it for days and weeks before it happens and try to put the fear of a new-unknown in its right place and just get thru it. It was a good day overall, lots of information to review on day one and infusion of my first of many "chemo-cocktails". Besides Anthony, who will oversee the entire treatment process, the other nurses we met (who will also be with me for the duration) were terrific. Of course, the fact that Jim was a BC Nursing school grad '76, and Jane's daughter goes to BC now, and that they each have 22 years of experience in oncology helped our relationship get off to a great start! Jane can do IV insertion like nobody can! It made for a very pleasant morning. All in all, I feel good today. I am tolerating all of the meds very well so far. I liken this round of chemo to a ride on the old white wooden Comet Roller Coaster of yesteryear @ Paragon Park on Nantasket Beach! The ride starts out slowly, takes you up up and up until anxiety puts you over the top - Prednisone x 4!, then on day 3, a quick bumpy descent (ya gotta love side effects!) into fatigue for another 24 hours...only to go in for another treatment on day 4 and start the ride all over. I always did like roller coasters...but this one...maybe not so much. Let's just say...I'm holding on tight for now. While not terribly thrilled about the whole situation to begin with, I am actually very happy to begin my campaign against these pesky amyloids, and oh so thankful that they now have the means and medications to hopefully make this setback...but a memory. Along with your loving support, God's healing powers and his almighty grace, I will endure and survive.
Today is another beautiful day so I'm headed outside to work in the garden. Thanks for listening!
Love to all,
Cheryl