Tuesday, March 29, 2011

"Time heals the wounds no one can see"

Ok, I'm really going to try and get thru this blog without losing it. So sorry for the delay. Below you find a really good (and OK, rather long) explanation...

It has not been my intention to be blog-gone for the last couple of months (111 days to be exact). Truthfully, there were many times when I sat down, wrote for a bit, only to find myself crying buckets, unable to finish. (blue is more than just a color) There were also times when I would begin to blog only to be drawn away by one of life's many responsibilities/pleasures and by the time I got back to it, it was outdated so I didn't bother publishing it. Life goes on and as you can imagine, I'm thrilled to take part in it any way I can!! At times it was easier to just be busy doing things than to sit and process about all the thoughts swirling around in my head. In hindsight, I would have been better off "downloading" the thoughts instead of "compressing" them in my mind. More on that later...

So I will try to bring you all up to speed on what's been going on...briefly. (hehe)

The holidays were a wonderful celebration of recovery and renewal with our family and friends. On Christmas Day we departed for a  west coast adventure taking in a Portland, Vancouver, and Whistler BC( yes I actually skied for 2 days!), even an overnight in Seattle including a quick trip to Pikes Place (of course Hayleigh and I had to get our Starbucks coffee). The trip began with my mother-in-laws 80th birthday celebration and a long awaited family reunion hosted by Fred's brother Steve and his family. Three days of incredible food, wine and family banter. Our week culminated with a northern detour to Whistler for some all out "shushing" down some of the most beautiful peaks in the world. The views as well as the time with my family took my breath away (literally). It was hard to come back to reality.

A few weeks later we managed to squeeze in a another trip. This time to FLA over the MLK weekend. taking in a soccer tournament (Fred's) and to visit with dear friends . Unfortunately I paid the price for all that running around and got sidelined with pneumonia and swine flu for about 10 days following. I probably should have worn my mask instead of my crown on the plane coming back! What was I thinking?!(hehe)

February and March were equally as busy and filled with lots of  life-moments to cherish.
Hayleigh turned sweet 16 (need I say more! Boys, cars, curfews, and shopping!).  We also celebrated Bret's 19th birthday, and he is now a proud member of Sigma Phi Epsilon. Shane survived "spring break" in the Bahamas (I can finally sleep again) and is busy filling his time with school, interviews and (more) parties until he graduates in May. I am just so humbled and grateful to be part of their lives in every way I can...as they grow their wings.

Sooo...back to my "download" issue...something I have been unable to complete for 3 months.
Besides everyday "life" gladly taking a starring role here, truthfully, I was very quick to find lots of other projects to protect me from sitting down and coming clean with what was really going on inside me. There was a part of me that didn't want to face all these strange and negative thoughts. I wanted to push them back as if they didn't exist. Unfortunately, with repression comes depression.

Initially I was taken back by these thoughts and fears. They would creep into my brain at the oddest times. I wouldn't talk about them with anyone. For weeks, I had to drag myself out of bed just to face the day. I didn't want to do anything or go anywhere. I was paralyzed. Fred would check in with me several times throughout the day: "Hi honey...whatcha doin?"  My flip response was often..."eating BonBons". Of course I was kidding...but what was I gonna say? I couldn't get out of my PJ's!  What the heck?? How and why could I possibly feel this way? I tried ignoring them...denying them...hiding them...walking more...staying busy...and I prayed a lot. Besides all of these useless thoughts, I was also dealing with the fact that my body had reached a plateau. It was not responding as quickly or as well as I had planned anyway. (I know...I know, its not my plan! but you know I always need to put my two cents in!). I think somewhere along the line (?), I came up with the idea that physically I was going to be just like I was before. That I was going to be able to do all the things I could do before.(Not gonna let a little stem cell transplant get in my way! LOL.) Plus...they said I'm in remission...so I must be all better right??

Yes and no. The lesson I learned here is especially important for all those current and future patients who are reading this. Everyone heals differently, and there is no denying that you have physical as well as emotional aspects about you that have changed, and that need to be addressed. (denial only works so long) They definitely work in tandem so you need to work at rehabilitating both. It is important to try and be active, but you need to recognize that things are not the same as they once were. I guess you could say that I was just not ready to accept the quality of these changes. (stubborn irish lassie!) As I have said before, the Amyloid is like cement in your body, often taking years to break down (they are currently doing trials in the UK on treatment to speed this up). As a result I still have all the symptoms (most of which you cannot see) I had prior to treatment.Weird, I know. (If you think that doesn't mess with your mind...you're wrong) Bottom line is that despite shutting the amyloid factory down, I have some "considerations" which in the scheme of things are totally acceptable. So now I am embracing a new word...balance. I was always an active person and love staying busy, but "busy" for me now just means something different. It is a balancing act between doing all the things I want to do (because I can!) and accepting the fact that my body (and mind) might need more time at rest. It should come as no surprise that I'm probably always gonna push for that next level but I have learned to recognize my limits before its too late.

It's all good now. Really it is. But wow...I certainly wasn't expecting that to happen to me. For those of you who know me, you know that I am usually an upbeat person and I have been very positive throughout this whole challenge.Why did this happen now?? Hard to figure, especially since I had such a great result from the treatment.
If I sounded just a bit ungrateful...please be assured that I am not...at all.  I am sooo thankful for the treatment, and the results that I received. I am still incredibly hopeful and positive in my fight against this disease. I talk to other Amyloid patients frequently and I know that I am one of the lucky ones. Part of my brain just needed to get all of that:). I have come to find out that apparently these thoughts and feelings are very normal  for anyone who has faced a life- changing disease or situation. You can encounter them before, during or after treatment. My oncologist jokingly says I'm just a late bloomer. I have been so focused on the "physical" aspects of healing that I was not prepared for the "emotional" wounds... (not that they didn't warn me...I just thought I was immune...who me?? LOL!) So after a few weeks of ridiculous self pity and "mood disturbances", I'm in a much better place now. Not that these fears don't find their way into my now pixie-covered brain occasionally (perfectly normal), but now I know whats happening and can deal with them before they invade my space:). I am so blessed. Life is good, ...and balanced :)

In time, I will have less and less of these thoughts and I will begin to feel stronger physically and emotionally. In time, I will not be thinking about this disease when I wake up every morning or as I go to bed each night. Lucky for me..."Time heals the wounds no one can see" (Todd Rundgren/Healing album 1983)

Next month I will go in to BU for a "lab only" (only 21 vials! LOL) visit to see if I need to go back in June for the (dreaded) biopsy...and I promise I will let you know how it goes :)
I always look forward to going to the clinic. They are wonderful people. I just wish they would keep their needles to themselves!

It goes without saying that we have much to pray about these days. (Japan!) Please include my amyloid friends (and their caregivers) in your prayers. Fay, Brian, and Robert, Cilla, Laura, and Jane to name a few. They too need Gods strength and mercy to help them fight against this horrible disease.
Love to all, and thank you so much for your continued support and encouragement!


Sunday, December 19, 2010

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!

Tuesday, October 26, 2010

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

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

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

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

Tuesday, October 5, 2010

DAY 100!! Keeping it real...

As I sit here typing this edition of my journey, I am elated at my "comeback" and my body's response so far. I know I am getting stronger everyday. But the realist in me knows this is only the beginning. A new beginning yes, but a beginning nevertheless, of a new, and unpredictable (isn't everybody's?) life, yet one for which I am so thankful. I will return to BUMC in December, at which time they will tell me if I am in remission for the time being. If I am, I will return periodically to keep tabs on the Amyloid "factory". If I have not had a "complete response", then they will determine if I should have more chemo, or a second SCT. I do not tend to dwell on it. It is what it is. My point being... I have a new life now, just a little different from the last, because I can and must live with Amyloidosis. Reality check #1.

 "When we long for life without difficulties, be reminded that oak trees grow strong in contrary winds and diamonds are made under pressure"
(Peter Marshall)

The last few months seems surreal at times (Did I really just go through all that?? Selective memory is sometimes a good thing - LOL). But as I sit here today, fascinated by the milestone that I have reached, alone in the quiet of my room, my journey is vivid... it is very real. I have visions of all I have been through (I just had to take pictures, didn't I?!), and can recall the last 8 months as if it was yesterday. I am remembering all the incredible people who cared for me at BUMC, the science and technology that made this diagnosis and treatment possible (fascinating to say the least), my unfailing entourage -including all of you, all the needles (never did like those things, yuck!), the ice cubes (including that my daughter found the strength within herself to stay by my side the whole time!), the chemicals, the pharmaceuticals to offset the chemicals, not seeing my kids for days on end, the side effects, swelling, pain and fatigue, ...the daily blood tests (to make sure I was still headed in the right direction!), all the trips to the bathroom (enough said!), all the wonderful cards, emails and prayers, the haircuts, the other patients, then I remember... coming home. I am one of the lucky ones. There are some whom I started my journey with who are still in the hospital...fighting, and hoping to come home. And there are some who won't make it home at all. Reality check #2.

I feel incredibly blessed that I have come though this extremely aggressive (lethal!) regime as well as I have.
I still wake up each morning thinking about my disease, but I also wake up thankful for everyday, I try to find joy in everyday tasks, and the things that I am able to do. I love that I am able to be home and spend time with Fred and Hayleigh (when they are not on the soccer pitch!), and Tess. (She's baaaack yeah!) I miss my boys terribly and feel like I barely saw them this past summer. I love that I am able to do things like drive myself places, get out to the store (shoes shopping of course!), take my dog for a walk, visit with family and friends (an arms length apart of course), go for bike rides, make apple pies, watch my daughter play soccer, do laundry and clean my house (God help me...did I really just say that!!) Life is good. Reality check #3

As Fred will attest, yes, at times I am frustrated because I cannot return to work yet (that would require being able to be on my feet all day!),and I can't do a lot of the things I used to do. Some days when I am totally fatigued, I am made acutely aware of what this disease and the treatment has done to my body. Please don't confuse this with depression, or pessimism. I am still an optimist, and I still have great faith in my doctors, my body's ability to fight this disease, and for my God for giving me the strength to deal with this head on. But I am not delusional. (that would require some sort of denial on my part) I am a realist. I have accepted my plight, found peace with what I now know about my future, and to use my friend Fay's words, I will deal with it day to day. Some days will just be better than others, that's all...and that's life (with or without amyloidosis!) But I am here. Reality check #4

An old friend of mine said to me several months ago, that after I was done with my chemo and SCT, I would say to him "that wasn't as bad as I thought". THAT is sooo not going to happen! But what I will say is (besides "I hope I never have to do that again!"),  is that not everything about my journey was bad. It has been a life changing experience for me and for those closest to me.Like many others who have come through a challenge such as this ( and I know I am not alone!), I have a greater appreciation for things that we often take for granted. The last 8 months have given me a renewed awareness for my life's purpose (a work in progress), and.I discovered things about myself and about our human nature which will definitely influence my future . "Within our wounds, we most often find our true strength". I am changed. Reality Check #5

I am...keeping it real.

Monday, September 20, 2010

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

Monday, August 23, 2010

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",

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

Tuesday, August 10, 2010

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 
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

Wednesday, August 4, 2010

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.

Wednesday, July 28, 2010

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

Monday, July 19, 2010

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