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.