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