Summer Update

It has been awhile since my last post.  In a nutshell the past three months have included the following:

• Trip to Gulf Shores marking my 1st anniversary of being diagnosed with cancer.

Enjoying the beach ~ April 2012

• Kindergarten Graduation for my oldest...how is this already possible?  Seems just like yesterday when I was having those sleepless nights, but what I wouldn't do to go back in time and rock my sweet little baby all night again.  He has taught me so many things over the past six years: everything from a simple reminder to appreciate the little things in life, to fully understanding what unconditional love really means, to seeing the beauty through the eyes of a six year old and being reminded how important those little things are.  Whether it be to appreciate tasting something new for the first time, seeing the determination and willpower of learning something new, seeing his inquisitive little mind that then has one question after another, to making others laugh simply by hearing his belly laughs.  I am reminded how important laughter is to the soul and I thank them for making me smile everyday.

Zevin and Mommy during his graduation.

Zevin reading is graduation speech.

• Since then, the boys have started a few summer camps, Zevy lost his two front teeth (with 3 more wiggly ones on the way), had a wonderful visit to nana and papa's house and enjoyed swimming by the pool, I had a Brain MRI on June 11th that confirmed my brain had no new disease and the one area that initially had several mets was still stable from the previous MRI's (which showed nothing on the scans after the radiation in November 2011), I have then undergone two new rounds of chemotherapy, and my time ended at the hospital with another blood transfusion last week (due to my hemoglobin numbers being low).

Tooth fairy gave Zevy two golden coins.

• This coming Tuesday, July 3rd, I go in for a CT-Scan follow-up.  It will include my chest, abdomen and pelvis (as all of my other CT-Scans have scanned in the past).  This is routine after having two rounds of treatments.  I will then wait around the hospital area for several hours, while the scan is being read by a radiologist and will then meet with my oncologist later that afternoon for the results.  Fortunately, I then have an "off" week from chemotherapy and look forward to celebrating the holiday with my family. 

Wearing one of my new long wigs.  

Peace, Love & Miracles

15 Things You Should Give Up To Be Happy

--by Dana Saviuc, Original Story, May 10, 2012
 
Here is a list of 15 things which, if you give up on them, will make your life a

lot easier and much, much happier. We hold on to so many things that cause us a great deal of pain, stress and suffering – and instead of letting them all go, instead of allowing ourselves to be stress free and happy – we cling on to them. Not anymore. Starting today we will give up on all those things that no longer serve us, and we will embrace change. Ready? Here we go:

1. Give up your need to always be right.There are so many of us who can’t stand the idea of being wrong – wanting to always be right – even at the risk of ending great relationships or causing a great deal of stress and pain, for us and for others. It’s just not worth it. Whenever you feel the ‘urgent’ need to jump into a fight over who is right and who is wrong, ask yourself this question: “Would I rather be right, or would I rather be kind?” Wayne Dyer. What difference will that make? Is your ego really that big?

2. Give up your need for control. Be willing to give up your need to always control everything that happens to you and around you – situations, events, people, etc. Whether they are loved ones, coworkers, or just strangers you meet on the street – just allow them to be. Allow everything and everyone to be just as they are and you will see how much better will that make you feel.

3. Give up on blame. Give up on your need to blame others for what you have or don’t have, for what you feel or don’t feel. Stop giving your powers away and start taking responsibility for your life.

4. Give up your self-defeating self-talk. Oh my. How many people are hurting themselves because of their negative, polluted and repetitive self-defeating mindset? Don’t believe everything that your mind is telling you – especially if it’s negative and self-defeating. You are better than that.

5. Give up your limiting beliefs about what you can or cannot do, about what is possible or impossible. From now on, you are no longer going to allow your limiting beliefs to keep you stuck in the wrong place. Spread your wings and fly!

6. Give up complaining. Give up your constant need to complain about those many, many, maaany things – people, situations, events that make you unhappy, sad and depressed. Nobody can make you unhappy, no situation can make you sad or miserable unless you allow it to. It’s not the situation that triggers those feelings in you, but how you choose to look at it. Never underestimate the power of positive thinking.

7. Give up the luxury of criticism. Give up your need to criticize things, events or people that are different than you. We are all different, yet we are all the same. We all want to be happy, we all want to love and be loved and we all want to be understood. We all want something, and something is wished by us all.

8. Give up your need to impress others. Stop trying so hard to be something that you’re not just to make others like you. It doesn’t work this way. The moment you stop trying so hard to be something that you’re not, the moment you take off all your masks, the moment you accept and embrace the real you, you will find people will be drawn to you, effortlessly.

9. Give up your resistance to change. Change is good. Change will help you move from A to B. Change will help you make improvements in your life and also the lives of those around you. Follow your bliss, embrace change – don’t resist it.

10. Give up labels. Stop labeling those things, people or events that you don’t understand as being weird or different and try opening your mind, little by little. Minds only work when open.

11. Give up on your fears. Fear is just an illusion, it doesn’t exist – you created it. It’s all in your mind. Correct the inside and the outside will fall into place.

12. Give up your excuses. Send them packing and tell them they’re fired. You no longer need them. A lot of times we limit ourselves because of the many excuses we use. Instead of growing and working on improving ourselves and our lives, we get stuck, lying to ourselves, using all kind of excuses – excuses that 99.9% of the time are not even real.

13. Give up the past. I know, I know. It’s hard. Especially when the past looks so much better than the present and the future looks so frightening, but you have to take into consideration the fact that the present moment is all you have and all you will ever have. The past you are now longing for – the past that you are now dreaming about – was ignored by you when it was present. Stop deluding yourself. Be present in everything you do and enjoy life. After all life is a journey not a destination. Have a clear vision for the future, prepare yourself, but always be present in the now.

14. Give up attachment. This is a concept that, for most of us is so hard to grasp and I have to tell you that it was for me too, (it still is) but it’s not something impossible. You get better and better at with time and practice. The moment you detach yourself from all things, (and that doesn’t mean you give up your love for them – because love and attachment have nothing to do with one another,  attachment comes from a place of fear, while love… well, real love is pure, kind, and self less, where there is love there can’t be fear, and because of that, attachment and love cannot coexist) you become so peaceful, so tolerant, so kind, and so serene. You will get to a place where you will be able to understand all things without even trying. A state beyond words.

15. Give up living your life to other people’s expectations. Way too many people are living a life that is not theirs to live. They live their lives according to what others think is best for them, they live their lives according to what their parents think is best for them, to what their friends, their enemies and their teachers, their government and the media think is best for them. They ignore their inner voice, that inner calling. They are so busy with pleasing everybody, with living up to other people’s expectations, that they lose control over their lives. They forget what makes them happy, what they want, what they need….and eventually they forget about themselves.  You have one life – this one right now – you must live it, own it, and especially don’t let other people’s opinions distract you from your path.

“Follow your bliss and the universe will open doors for you where there were only walls.”  -Joseph Campbell

Peace, Love & Miracles

VIP Treatment

Sporting my short and sassy new wig (and our treasures of the day).

The past two weeks have been pretty uneventful, with the exception of enjoying my new wigs and today we were honored to receive VIP treatment at this afternoon's White Sox game.  My brother was kind enough to reached out to both the Cubs and Sox organizations several months ago.  I will always be a Cubs fan, but my boys tend to like both teams.  Nonetheless, two weeks ago we received a VIP parking pass and 6 tickets directly from the White Sox organization.  Our highlights of the game:

• VIP parking, once again we were lucky enough to only be four cars from the main entrance.  
• Being escorted to our front row seats behind the Sox dugout.
• Getting a ball from Gordon Beckham (Zevin's favorite Sox player).
• Getting a White Sox t-shirt thrown to us.
• Being on the Jumbo-Tron multiple times.
• Having one of my mom's friends text her during the game...informing us they saw us on tv every time a right-hand batter was up (due to our seat positioning)!
• Eating ballgame hot dogs, peanuts, popcorn, etc...  
• The boys getting their picture taken with the mascot.
• Enjoying spending time with my family and seeing my boys smile.

 

 Boys and the Sox mascot

 Fox Family - front row seats

The boys with Nana and Papa

My hope in life, is that one day....my boys will see just how lucky they are (when we were showered with many special events from our generous friends and family, as well as extremely kind and thoughtful organizations).  They are experiencing things in life that are beyond what many kids would only dream of.  For them to be grateful in life (not selfish or spoiled) and extend their generosity to others (somehow/someway in the cancer community) would be my greatest gift in life. 

Up next....this coming Monday (23rd) I will get my next round of chemo (Avastin) and then Tuesday we leave for a family vacation with my parents to Gulf Shores.  This is kind of what I consider my one year celebration, since Gulf Shores is where we spent time as a family after my initial diagnosis last year.  The beach has a way of calming me and soothing my soul.  

Peace, Love & Miracles

Latest Ct-Scan Update & Wig Party

On Tuesday, I received good news from my oncologist.  My CT-Scan was good and better than what she expected with this chemo regime.  Apparently I am considered extremely strong...having endured ten harsh chemo protocols.  The scan showed less liver masses and I had quite a bit of sclerosis (hardening of the bone, a sign that my bones are healing).

Next step...I will be on Avastin for at least the next 6 weeks (then I will have another CT-Scan).  Avastin was one of the 3 chemo drugs that was part of my last chemo protocol, but this time around it will be less harsh without the other two.  Avastin helps prevent blood vessels from reaching the tumor, starving it and causing it to stop growing and shrink.  It is basically a "maintenance" chemo drug that keeps tumors from growing.

Having had such a good response with my last chemo rounds (#1-4), my oncologist wants my body to take a little break from the harsh chemo combination...and let my body simply relax a bit.

With my Avastin protocol, I only have to go 1 day (for about an 1.5 hours once you include the blood work and possible dr. appointment and then the 30 minute infusion of Avastin) and then I don't have to come back for another 20 days.  So....basically two visits to the hospital a month and that's it.  Couldn't be more thrilled to have a break from the grueling hospital visits.

Wonderful news considering my diagnosis anniversary is exactly a year ago today.  

With such good news and the anniversary of my diagnosis being here.....my mom and I had an afternoon wig celebration on Wednesday.  I spent 1.5 hours trying on all different kinds of wigs...from red to my natural color and from short and sassy to extra long.  Ended up walking out with 4 new wigs (short, 2 medium (one curly) and an extra long one.  Lots of laughter and fun celebrating my 1 year diagnosis mark.

The boys had fun trying on my new wigs too...if I had little girls, here is what they would look like...absolute beauties!!

Zevin

Cohen

Peace, Love & Miracles

One Year Milestone

“Birthdays don't really matter much anymore ... for me, I sort of have a new birthday and that's October 2nd, the day I was diagnosed, ... the day we all sort of look to and mark these milestones by one year, two year, five year, 10 year. Hopefully, I have a 50 year.”   - Lance Armstrong



Today, Friday, April 6th is my diagnosis birthday.  One year ago today, I was diagnosed with small cell poorly differentiated neuroendocrine cancer (primary unknown); about two weeks later, I started this blog. 

One of the toughest things about this past year has been trying to lead a "normal" life - in between doctor appointments...my blog is a record of both the cancer, and life beyond the cancer.  

The past year in a nutshell:

• Multiple ultrasounds of the liver
• Chest/Abdomen/Pelvis MRI:  2
• Brain MRI: 4
• Spine MRI: 1 (my absolute least favorite scan, to put it nicely....its torture being strapped in for 2 hours)
• Needle Liver Biopsy
• Octreotide Scan (3 Day Scanning Process)
• PetScan
• CT-Scans to the Chest/Abdomen/Pelvis): 7
• Therasphere (radioactive cancer therapy)
• Gall Bladder Cholecystectomy surgery
• From the Gall Bladder pathology report it was detected that I had another form of cancer in the GB as well, what they called, Adenocarcinoma of the gall bladder (now viewed as the primary).  Apparently this then mutated into the neuroendocrine cancer.  There are NO reported cases of this in medical history, only ME.
• Brain Radiation (for 10 days)
• Genetic Blood Banking
• Port installed in my upper chest
• Received my first blood transfusion
• 4 Hospitalizations (2 to 4 days each)
• 3 Trip to the ER
• 11 rounds of Chemo
• Countless hours spent at the hospitals (for chemo visits, blood draws, gall bladder attack hospitalizations, to many scans to count, etc...)

 Trips to heal my soul and body this past year:

• May: Gulf Shores
• August:  Kauai, Hawaii
• September:  DisneyWorld
• December:  North Carolina (to visit my brother and his family) and Miami
• February:  Miami (boys were able to be "pilots" for a few minutes)
• March: Miami

Extra special surprises that have happened for the boys (due to my cancer):

• Dolphin Encounter (had our own special 1-on-1 encounter with the dolphins and giraffes)
• Multiple trips to see the Chicago Bulls (the last one Benny came and "kissed mama on the lips")
• Upcoming (on the 19th of this month):  Chicago White Sox VIP treatment (more to come after the game)

So here is to another year of scans and chemo treatments and Northwestern Memorial Hospital appointments, enjoying my boys and being a mother, traveling with family and eating great food...here is to another year of celebrating life - one day at a time.

Peace, Love & Miracles

Bulls Tickets & VIP attention

Bulls Game - 03.30.12

Talk about some lucky boys....Gilda's Club (the organization that was established by Saturday Night Live's Gilda Radner for cancer patients and their family) called us on Friday afternoon saying someone donated tickets for Friday nights game and would we like four tickets?!  Hopefully one day the boys will see how fortunate they are (and pay it forward)...through various friends and companies the boys have seen at least 5 NBA games by the ages of 4 and 6.

On a side note, the boys have been attending a weekly playgroup that meets on Saturdays at Gilda's.  They are with other kids their ages who have also been stricken with cancer in some way (either a relative is currently sick or already deceased).  They do fun things, but also talk about real life things...so they know they aren't alone and aren't the only ones experiencing this.  When the tickets were donated, Zevin's teacher instantly thought of him and his love and obsession with basketball.

Yet again, this generous and kind gesture made me all teary eyed.  All we were told was to go to a certain gate and then get our tickets at will call.....once at the gate, the gentleman had our name "on the list" and instructed us that we had VIP free parking.  We were only 4 short rows from the main entrance parking and our tickets were lower level (only 15 rows up from the court).  We were all on cloud nine.

Then, to top it off...during the second quarter, Benny the Bull made his way to me.  He obviously must of known we were Gilda's Club guests (or maybe the donator called in)?  Anyway, Benny made a big scene pointing at me from afar and then made his way to me by climbing his way over people/chairs.  He then sat right next to me and gave me multiple kisses, gave the boys a Benny stuffed animal and Benny t-shirts.  It was absolutely great....and the boys kept saying "Benny kissed mama".  Got teary eyed again, as you can tell in the photo.  Definitely a night my family will always remember.

What a wonderful organization and what a kind family who donated their tickets to us, a family who is beyond grateful.  My boys thank you and I thank you!

Someone is missing my hair...

My sweet baby - Cohen (the same evening mentioned below)

One story I have to share while we were on spring break made me all emotional and teary eyed (still does while typing this out).  While Cohen is the youngest of our two boys, he is an old soul, filled with love, orneriness and deep rooted kindness.  Anyway...one evening I wore a dress and my wig out to dinner (both of which I rarely do).  When Cohen saw me, he got the most precious smile on his face....he just lit up the room smiling from ear to ear.  I could tell instantly what he was missing and what he longed for....my hair.  Still smiling, he started gently touching my hair and said "you look beautiful mama".  He repeated it several times throughout our evening.  What a sweetheart.  Absolutely precious.

With cancer comes a lot of insecurities, especially when you have been bald for nearly a year.  I am guilty of feeling "ugly" at weak moments during this battle, but then this little guy comes along with a simple gesture and a smile that warms your heart....and makes you feel beyond special and beautiful.  I don't know many four year olds that can grin from ear to ear (knowing why they are smiling so big and what they are missing so much) and then say four little words "you look beautiful, mama"...it melted my heart and made my day brighter.

He is one beautiful soul and I cherish him (and his brother) every single day.

Spring Break

Boys on Spring Break

Where to start...the week of March 12, I begin my fourth round of chemo with this protocol (10th overall when you include my first protocol almost a year ago).  The week was uneventful with the exception of my three month Brain MRI follow-up on Friday, March 16th.  I met with my favorite brain radiologist about two hours after the scan....to hear welcoming news, "everything looks clear".  She didn't see anything show up in the MRI images again this time.  Dr. Maryanne Marymont felt the Parp-Inhibitor (brain mets/chemo clinical trial drug I was on in November) allowed the chemo to get into the brain and work on the brain mets too.  I will have a follow-up Brain MRI every three months (to make sure the brain mets continue to stay away), but will not meet with her unless something changes on my MRI's (or as she said, "if I just want to come and visit").

The last two rounds there was talk about getting a blood transfusion since my red blood count and hemoglobin numbers were low...so that following Monday, March 19th, I went in for a blood transfusion (along with my mom).  It made me extremely grateful to all the people that donate blood.   As I slowly watched someone else's blood enter my body, I had tears running down my checks.  For those that don't know (I didn't), it took over an hour for a small bag of blood to enter my body via my port.  Within hours I began to feel myself....something I hadn't felt since last summer.  Thank you to the generous soul who took time and donated your blood for me.  I am forever grateful.

Our spring break plans were solely based on how I was feeling.  Prior to the blood transfusion, I didn't think I would be going with Kevin and the boys.....but luckily things turned around and we left for a 10 day stay in Miami.  It was nice to let my body heal in the sunshine and of course, enjoy some quality family time.  I was also fortunate enough to be able to visit with my dear friend Karen and her family (while her husband attended a conference) at nearby Hollywood.  We ended up staying at the resort for three days as we celebrated Kevin's birthday (at the same time, we were trying to avoid the youngster annual "Ultra Music Festival" that drew 150,000 people right across from our balcony - apparently we missed Madonna's surprise appearance).

We had a wonderful spring break....quality family time, relaxing in the sun, visiting with dear friends, and simply cherishing our time together.

What's next?  Tomorrow I go in for a CT-Scan (after completing four rounds of chemo) to see where I am at now.  I then see my oncologist on Tuesday (blood work, meet with doctor and discuss scan and proceed with the next step).  I was previously told I was at my limit with one particular chemo drug, so we will see what her advice is on Tuesday.

Peace, Love & Miracles

Enjoying pool time with Moorea and Tiegan

Added bonus for the parents...kids went to the resort camp while we relaxed poolside and caught up.

Return to Reality

The first few days of our Miami trip were a bit on the chilly and rainy side (still better than Illinois weather so we tried not to complain that much).  After rearranging some of our appointments/work back home, we opted to spend another five days...considering the forecast was sunny and in the 80's.  Why not?  The sun soothes my soul and warms my heart!  Good medicine.

On our return flight the pilots were kind enough to take the boys into the cockpit and explain all kinds of things to them.  The boys were in heaven.

Our adorable co-pilots...on our return flight home from Miami.

Last  Monday I had my follow-up CT Scan after my two rounds of chemo....and the following day we met with my oncologist to discuss the results and then continue on my day with chemo treatment.  She walked into the room saying she had good news for me.  The scan showed a 40% reduction everywhere (with the first two new chemo rounds).  In fact, she said "it was even better than she expected".  Oh happy day!  Happy day!

The plan is to do 2 more cycles of this protocol and then reevaluate.  I finish up the 3rd round last week and am now just recovering from the chemo fatigue, dehydration and on occasion nausea.

Enjoying the good news in my life.

Peace, Love & Miracles

Having a sleep over with one of my sweethearts....love that he still sucks his thumb (holding onto the baby days as long as I can).

Latest Update...

My apologies for the late update.  Somehow it is already February.  I have to be honest though, the deeper I get into this cancer journey, the more difficult writing blog updates become.  Anyway, you are here for an update...so here goes!  :)

On January 9th I had another CT-Scan of my chest, abdomen, and my pelvis area.  Due to the MRI back in November that showed growth (brain and bone), I could only assume there would be additional growth or new mets on this CT-Scan.  We met with my oncologist the following day....to confirm growth and she immediately begin talking about my next step.  I was grateful going into the meeting "prepared".  It somehow made the news more manageable, if that makes any sense.  I wasn't going to dwell on the news, I was ready to hear what we were going to do about it.  Strength and courage....two words I know I embody.

My oncologist knew in advance I wanted to begin the next step as soon as possible, so the day of our meeting (Tuesday, January 10th), I started another chemotherapy protocol.  It is similar to my other chemo protocol, in that I go to the hospital 4 out of 5 days a week (3 different chemo drugs this time around, instead of 2), and then I have two weeks off.

On a side note, I also had another brain MRI on Tuesday, January 10th.  Despite getting not so great news that my cancer had spread or grown in certain areas the day before....I did come out with some wonderful news on Tuesday.  My brain radiologist popped her head in and said my brain MRI from Tuesday showed ALL my brain lesions are gone!! 

Fast forward to February...I just finished my second round of chemotherapy and am now beginning my two weeks off.  We are leaving for Miami again tomorrow....hoping the sun and warmth will heal my soul (as well as cherish some family fun time).

Peace, Love & Miracles

Necklace one of my girlfriends wears as a daily reminder.  xo

Happy Holidays!

Today I had my 4 week follow-up brain MRI and in the doctor's own words..."good results, wouldn't even know it was your scan" (referring to the comparison scan done at the beginning of November).  Certainly an early Christmas gift for me...any good news touches my heart immensely.

I will have another brain MRI mid January...eight weeks after my radiation was complete.  This is when the doctor would have typically asked patients to return for a scan, but due to the clinical trial I took part in, the trial required a scan at 4 weeks.

My radiology oncologist even greeted me in the waiting area this afternoon with a gift...a beautiful red scarf.  I cried because I was extremely touched by her thoughtfulness and because she is one of the few doctors you meet that are truly in this to help their patients.  How many doctors greet you and leave you with a warm compassionate hug?  How many doctors have cried along with you?  She is a true gift.

As of tomorrow our holiday plans begin....my parents, the boys and I are enduring our first long road trip (with the boys) to North Carolina to visit my brother and his family.  Making a few pit stops (for the boys) at the Indy car museum and the Louisville Slugger museum/factory along the way.  Kevin will then meet us on Thursday...and after staying a couple days in NC, our little family is then flying to Miami for two weeks.  Looking forward to relaxing and feeling the warmth of sunny weather...just what my body needs!

Once we return from Miami, I have a CT-scan for my chest, abdomen and pelvis area (including the liver) on January 9th and then meet with my oncologist the following day to discuss the next step (assuming it will be chemo of some sort).  

In the meantime, I am enjoying my good news today.  Looking forward to celebrating the holiday season with my family and looking forward to Peace, Love and Miracles...for the upcoming new year!

During our private dolphin adventure in November.

My cup runneth over with angels!

"A day is made more beautiful when touched with kindness."

To my many angels...

• Joel and Jeris:  for sending the lovely floral arrangement during my recent surgery.  Joel...I knew one day you would admit I was the "stronger" one!  :)  xo

• Karen:  for your unbelievable support and for being a best friend during a trying time.  Your thoughtfulness continues to amaze me and I thank you for everything you do for me, as well as my family.

• To My Chicago Mom's Group:  for sending the most beautiful bouquet of flowers while I was recovering from surgery.  They brightened my entire week.

• Candace and Melissa:  thank you for the gorgeous flowers, as well as the "love" necklace.  I certainly feel that I am surrounded by love every second of the day.  

• Colleen:  thank you for your visits, your touching emails, the delicious chocolate platters, and the comfy "love" pajamas!  

• Aunt Dana:  for sending me such heart-felt and touching cards, as well as the beautiful throw....it has been a blessing to have your love wrapped around me while I have been healing this past month. 

• Ryan and Stephanie:  for sending the recordable books...the boys absolutely LOVE them!

•  Jen Ikens:  for organizing a dream come true for me....a one-on-one dolphin encounter with the boys (something I had on my bucket list and had promised the boys we would do one day).   Everything imaginable was thought about....from a private tour/session with just our little family of four, to being on the deck with the actual dolphin trainers, feeding the dolphins, learning training techniques and then actually having the boys participate, to having a professional photographer and videographer available to tape our entire session.  I am beyond grateful.  Thank you from the bottom of my heart.

• Dana:  for the touching "wishnest"...thank you for sending me such special wishes. 

• Jeris and Paula:  for cutting your hair and donating it to "Locks of Love" in my honor.

• The Flagg Family:  for sending a beautiful bouquet of flowers....it put a smile on my face and brightened my day.

• Jennifer, Shirley and Merla:  for not only making my day, but for making my mom's day as well.  I am so thankful for your recent visit....it was so nice to laugh and simply be in your company.  I love you all.

• Shawn:  thank you for driving all the way up from St. Louis to visit for the day/night.  It felt like not a second had elapsed and we were right back at being college roommates all over again....something rare and special, where only true close friends can do that.  Your laughter warmed my heart and your presence made my day!  I love you.

• Jenny B.:  for sending the delicious dessert with Jennifer,  as well as the goodies for the boys.  So extremely thoughtful of you...thank you.  

• Dinah and Sheryl:  my favorite oncology nurses....thank you Dinah for coming all the way over to the hospital to give me a humorous book during my last hospital stay (lord knows I needed a good laugh)....and to Sheryl for your hugs and your amazing ability to make me laugh during times when it is the last thing I think I can possible do.  I am so blessed to have you in my life.

• Diane:  to my childhood/life-long friend who came up to visit today....I so enjoyed getting out of the house for lunch and just catching up. Thank you from the bottom of my heart.

• The "Meal Train" Families:  from girlfriends to families in Zevy's classroom....we are extremely grateful for your weekly meal deliveries.  Thank you for your unbelievable kindness.

• And to all of my friends and family who continue to keep me in your daily prayers.  Your cards and emails are a bright spot in my day and I truly cherish them.

Peace, Love & Miracles

Long Overdue Update...

I realize this is a long overdue update....it has been almost two months since my last post!  A lot has gone on including 3 trips to the ER, my very first ambulance ride, 4 actual hospital stays, multiple hospital visits, multiple scans, open (Cholecystectomy) gall bladder surgery, as well as radiation treatments.

Trip to Florida - Disney with the boys

Oct. 5:  First trip in an ambulance during our stay at DisneyWorld, trip to ER due to vomiting and severe abdominal cramping (discovered a week later they were gall bladder attacks).  Luckily I was only admitted for 24 hours and was still able to enjoy all of the favorite parks/rides with the boys.  

Disney Halloween Party

Cohen - exhausted and loving Mickey!

Character Breakfast at resort

Oct. 8-11:  ER trip #2/hospital stay #2 - after returning from Florida due to gall bladder attacks, CT scan

Oct. 14-17:   Hospital stay #3 - Interventional Radiology - gall bladder embolization preformed by Dr. McDreamy (cut off blood supply to the tumor, due to the vascularity of its nature) and then immediately went into the operating room for an Open (Cholecystectomy) gall bladder surgery.  This is considered major abdominal surgery and I will admit it was the worst pain I have ever experienced.  Fortunately time heals all wounds and a month later I only have tenderness at my incision from time to time.

Another CT Scan was performed during this hospital stay....and it showed a "huge" reduction in my liver masses due to the TheraSphere procedure which was performed the month prior.   Dr. McDreamy confirmed it was "uncommon" to see such a reduction in only one month and stated I had a "very good response".  The maximum shrinkage is apparently the most 4-6 months post TheraSphere....so we are keeping our fingers crossed that the little beads continue to work their magic for several more months. 

Oct. 28:  Hospital visit - discussed gall bladder pathology report.  A golf ball size mass was in my gall bladder (thankful the organ is no longer in me).  Discovered what one doctor said was "two forms of cancer in my gall bladder".

1. Adenocarcinoma of the gall bladder (extremely rare type of cancer - they now believe this is my primary)
2. The doctors feel the Adenocarcinoma of the gall bladder then mutated into the "Small Cell Poorly Differentiated Neuroendocrine" cancer I had initially been diagnosed with seven months ago.  At this point, the mets (in my liver) are still believed to be the neuroendocrine cancer that simply mutated.

On a side note, my doctor informed me that my case continues to be more unique as time goes on....considering there are NO reported cases of this ever happening.  Leave it to me to be that one unique person.  

Oct. 30-Nov. 2:  ER trip #3/hospital stay #4 - gall bladder symptoms were gone, although I was still extremely fatigued, loss of appetite (had lost about 12 pounds in the last month), and just generally feeling crappy.  Had multiple scans trying to figure out why I wasn't getting better, including another CT-Scan, a Brain MRI, and a Spine MRI (which lasted 2.5 hours, purely brutal due to being strapped down and locked in place.  Will certainly request being knocked out if I ever have to have another one).  Brain MRI showed I had several small lesions on my brain.  Met with a wonderful doctor (who I like to believe is one of my angels) who informed me of my next step along this journey....radiation of the brain.  During a dark time, she took the time to nurture me and my family.  She cried along with us, gave me words of wisdom when I desperately needed it, expressed that she expected I "would have good results" with the radiation, and she is simply one of the most compassionate doctors I have been fortunate enough to meet.  So grateful she is part of my team. 

Nov. 8-21:  Part of a clinical trial for brain mets, where I undergo 10 days of radiation, as well as take an oral chemo pill twice a day.  Side effects are loss of hair (although I am still sporting all of my stubborn pixy cut), burns due to the radiation and fatigue.

  

Waiting for my last radiation treatment - 11.21.11

So....that is my last two months in a nutshell.  Thankful to be done with my radiation treatments....so I can truly enjoy spending quality time with my entire family this Thanksgiving holiday.  

Still believing in peace, love and miracles.

Dawn Berlynn

dawnbfox@hotmail.com

My Angels

"Friends are angels who lift us to our feet when our wings have trouble remembering how to fly"

I have been blessed with amazing angels along this journey of mine.  I am extremely grateful for all of the love that surrounds me.  Just a little thank you to my recent angels:

• Karen, Betsy and Jen:  for surprising me while I was in the hospital last week.  It was so nice to "forget" about my health issues and just enjoy dinner and your friendship.

• Jennifer:  one of my very first childhood girlfriends....thank you so much for the wonderful care package last week!  You know neither one of us can ever get tired of the "Bridesmaids" food poisoning scene.  I was crying from laughter once again....it is so good for the soul!

• My favorite teacher - Mrs. Wildenradt:  I was extremely touched when I received your beautiful and heartfelt card/note.  It made my day and certainly lifted my spirits.  (Mrs. Wildenradt was my 4th grade teacher....and the reason why I became a teacher myself)

• To the many friends and family who continue to send me thoughtful emails, facebook messages and cards...thank you for touching my heart and brightening my day.

• To the stranger who passed me on the sidewalk and said "you look real nice"....little did he know it was the first time I was going "au naturel" out in public (without sporting my security scarf).  This man's simple yet powerful compliment certainly made my insecurities dissipate.

• My favorite oncology nurse - Dinah:  for coming to my hospital room and delivering me a box of delicious cupcakes from "Sprinkles"....you have touched my life in more ways than one...you are a gift to every cancer patient you encounter and I am so grateful to have you in my life.

• To the girlfriends who have delivered weekly meals for the last 5 months on Wednesday's....I can't possibly thank you enough for your loving and extremely generous gift.

• To my little miracle boys:  they light up my life and give me a reason to live every single day.  To my little Cohen (aka: Coco) who came into my bed in the middle of the night and snuggled up next to me and kissed me on the nose.  To Zevy who thoughtfully said "don't worry about doing it today, I don't want you to get tired mommy"....this was in response to me trying to organize their new play room and get their train table set up again.

• My parents:  for your enduring love and support and for being by my side every step of the way....through the countless hours you have spent at the hospital, to helping out with the boys and for simply taking care of me...you certainly are pillars of great strength and comfort to me.  

• Kevin:  your strength, love, help, and support has made it possible for me to have the determination and attitude necessary for winning this battle. Thank you for being by my side.

• Carlina and Larry:  for the many hours you have helped us out with the boys....due to hospital appointments or simply needing a helping hand.  Thank you for all of the delicious homemade meals you have brought over when I haven't been feeling good.  Your love and support means the world to me.  Thank you so very much!

• Anthony - my favorite Interventional Medicine nurse:  I first met Anthony (a big teddy bear) five months ago when this journey first began.  He was the nurse who took care of me when I was getting my liver needle biopsy back in April.  He has an amazing gift with people and he even managed to make me laugh during one of the most stressful times in my life....it also doesn't hurt that he calls me "princess".  Not knowing I would ever see him again....a week later I delivered him a thoughtful thank you note, as well as a box of sweets from my favorite bakery in the city.  Fast forward five months, and to my delight, Anthony was with me again during the Pre-Mapping and TheraSphere procedures this past month.  I was immediately emotional when I saw he would be the one taking care of me and he responded by hugging me and quietly said "God made sure it would happen this way".  He then called several days after my procedure just to check up on me.  On a side note, during our first encounter, Anthony expressed that he was going through some of his own medical issues and expressed how fortunate I was to have such a loving and supportive family - considering he didn't have that.  Without my knowledge, my dad quietly slipped him a piece of paper with his number on it and told Anthony to call him when he was going into the hospital - so he could have someone by his side too.  Warms my heart.  Caring gestures mean so very much!  

• Beata:  to my favorite person who lives in Poland....your weekly emails are always inspiring and keep me believing that it is possible to win this battle. Thank you for caring about me so much.

• Melissa and Candace:  for bringing me hot chocolate this morning.....I truly loved being able to catch up and laugh (bedbugs stories and all)!  You both have been amazing and extremely caring friends and I am so grateful to have you in my life.

•  Sister Diane:  our wonderful neighbor who just dropped off another loaf of the most delicious homemade cinnamon bread ever!  Thank you for your continued prayers and for being such a thoughtful neighbor.

• Tressa:  to one of the sweetest and most lovable friends I am fortunate to have known for 22+ years.  Your care package certainly brought me many smiles, as well as peace and hope during this journey.  I loved the box that everything came in...just as much as every thoughtful gift that was inside!  My mom happened to be here when the package arrived and she said she was just about to purchase one of the books you had given me....great minds think alike.  I love you dearly and am so happy to call you my friend! 

• Mrs. Ault (the lovely mother of one of my favorite fifth grade students):  for sending me the most beautiful and touching message this morning and for helping me face the day with continued optimism and strength.  Thank you from the bottom of my heart!  See her message below:

"Dawn, I have to tell you that I read your post...thanking all the precious "angels" in your life....Dawn, you have been and continue to be an amazing angel to so many people.  Your strength and courage amaze me.   I just have to share...as a mom of one of your former students....you were the best!  I know that Anthony loved you!  How could he not.....you just have such a gift of making everyone feel special.   And, then when that package came in the mail many years later when Anthony was graduating from Pekin High...I honestly couldn't believe it.  You are an angel, Dawn.   And, I pray with all of my heart that everyday is going to be a good day for you and that precious family of yours....."



Thank you for the touching and beautiful gestures you have all given me...."my cup runneth over with love".

Peace, Love and Miracles

dawnbfox@hotmail.com

Therasphere Update ~ Hospital Stay

In everyone's life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.

~Albert Schweitzer

Dr. McDreamy was just the burst of flame that I needed....he made me hopeful again (during a time when there was a lot of uncertainty and fear of the unknown path ahead) and he certainly rekindled my inner spirit.

The TheraSphere procedure went as expected on Tuesday, September 13th.  We arrived at 6:30am and by 7am I was prepped and in the operating room.  I again had to have a 6 hour recovery period where I literally had to lay flat and keep my legs straight in order to seal the puncture sight.  We finally left the hospital after being there about 9 hours.  Again, the doctor said the procedure was successful in that they were able to get to all of my tumors in the liver.  Now we are just waiting and praying that the little glass beads of radiation are doing what they were designed to do.

Over the course of the next few days I began experiencing flu-like symptoms, nausea, fatigue and I had a fever off and on...all was expected.  The doctor informed us that my fevers were indicating the radiation was killing the cancer cells, so that was a wonderful side effect to have!  That weekend my symptoms started to become worse (dehydration, severe discomfort and vomiting), so on Monday I was advised to go to the oncology floor at the hospital and get blood work and fluids through an IV.  Apparently I was extremely dehydrated and there were concerns with some of my levels being low (gathered from my blood work results)....so they decided to admit me into the hospital a block away.  This was the same hospital I gave birth to my youngest son three years ago, so it certainly brought back many wonderful memories.  I was hospitalized from Monday-Wednesday.

My mom was absolutely wonderful and stayed with me both nights while I was in the hospital...while Kevin and my dad took care of the boys.   There is just something about having your mom by your side - nursing you back to good health.  I am extremely grateful and fortunate.

On a side note, the week before Dr. McDreamy personally emailed the neuroendocrine specialist we were planning to see at Dana Farber Cancer Institute in Boston....he referred to him on a first name basis and certainly pulled some strings.  I received a phone call within a few hours from the Boston office offering to move up my appointment immediately.  It certainly is nice to have connections from time to time!  We were suppose to head to Boston last Monday, but due to being hospitalized our trip to see the neuroendocrine specialist was cancelled for the time being.  A trip out East will be in the works again once I am fully recovered from the TheraSphere procedure.

Since being released from the hospital last Wednesday, I have been ordered to rest and take it easy.  The fatigue could last anywhere from 2-4 weeks. I have noticed I can only do house work/pick up after the boys/go to the store/etc... for a maximum of 5-10 minutes before I hit a wall and am suddenly extremely fatigued and literally have to sit or lay down and regroup.  Because of this, I have pretty much been confined to the bed or the couch most of the day.  It is nothing like I have ever experienced before.  The doctor had said I would experience fatigue, but I didn't really know what that consisted of until now.  Certainly different than chemo fatigue....in my case, more debilitating.

Planning to rest as much as possible this week....in hopes of gaining my strength and energy back before we leave for a prearranged trip to DisneyWorld with the boys on Sunday.  I certainly don't want to miss out on any of the excitement from the viewpoint of the boys....they "can't wait to go to Mickey's house" and I clearly will need all of the energy possible being at Disney. 

What's next....currently we are just letting the little glass beads do their magic.  I go in for an MRI and then consult with Dr. MrDreamy on Tuesday, October 11th.  This is also when we will discuss my next step regarding my gall bladder.  So on the 11th, we will have an idea of how successful the procedure was....hoping the tumors will be gone completely.  :)

 Recovery period after the TheraSphere...it's hard to tell in the photo, but I still have a lot of hair.  It never fell out completely with the chemo treatments....in fact I have actually had to shave it 4 times since the first initial haircut.  Had I know my thick locks were going to be so stubborn, I probably would have opted for a short "Halle Berry" haircut.  In the meantime, the hair I did lose during this process is coming in full force.  The boys love feeling it and keep asking "why does it feel so fuzzy, like a caterpillar"?  

Peace, Love and Miracles!

dawnbfox@hotmail.com