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

 

Next step in my journey...Dr. McDreamy has arrived!

So much has happened since last week! Here is an update of what all took place....

Last Tuesday's appointments:
My PET-scan still wasn't approved....and was canceled again Wednesday (and still pending insurance red tape). None the less, the MRI confirmed that there was good shrinkage of the tumors during my first 4 rounds of chemotherapy. Then my oncologist surprised us with a turn of events and had arranged for us to meet with the "Director of Interventional Radiology" immediately afterwards.....as our next step along this process. He is considered "THE Doctor or Guru" and is the best specialist at what he does and fortunately he is at Northwestern....people come from all over the country to see him for the above procedure called TheraSphere.

Our meeting left me feeling grateful and even more hopeful. Despite his busy schedule they made an opening for me and scheduled an innovative procedure called a "TheraSphere" (see video above). It is a 2 phase procedure.

"TheraSphere is a relatively new targeted cancer therapy that consists of millions of tiny glass beads containing radioactive yttrium-90. The glass beads are delivered directly to the liver tumors. The doctor will inject TheraSphere into the hepatic artery of the liver through a small flexible catheter. The tiny radioactive glass beads flow directly into the liver tumor via its own blood vessels of the tumor. The radiation destroys the tumor cells from within the tumor, with minimal impact to the surrounding healthy liver tissue. The radioactive microspheres will continue to emit radiation over the course of several weeks. The procedure has common side effects, including fatigue, pain and nausea for about a week."

The first phase was scheduled two days after our initial meeting....on Thursday. After multiple comments were made regarding my rare cancer, I realized I was considered a unique case (ie: rare cancer, young healthy patient), especially after his head nurse said "we will move mountains for you to get squeezed into his busy schedule".

Grateful for doors opening up so quickly and for having the ability to have this procedure/surgery....just tired of hospitals! :) Felt so hopeful after leaving the hospital on Tuesday.


Last Thursday's Appointment:
This was my first day in what they called a "Pre-Planning Angiogram" (ie: "road map" to help plan for the TheraSphere procedure).

In a nutshell, I was given pain medication and sedated and then a catheter was guided through the femoral (groin) artery and into the hepatic artery of my liver. Three important steps were then performed:

1. Mapping the arteries of the liver to identify any blood vessels that may be feeding the tumors.
2. Possible insertion of coils into small blood vessels going to my stomach or intestines. This prevents any radioactive microspheres from traveling to my stomach and causing an ulcer.
   
3. Finally, diagnostic imaging spheres (or what I call fake beads) are injected into the liver. These spheres consists of harmless proteins that are similar in size to the TheraSphere yttrium-90 microspheres and will provide the doctor information regarding blood flow within the liver. By using these diagnostic spheres, the doctor is able to ensure that the TheraSphere will stay in the liver and does not travel to other organs that could cause side effects.

After the test, the tube in the groin was removed and then I was moved up to the nuclear medicine floor while I was scanned and observed....making sure the "diagnostic spheres" were staying where they needed to be. It was an extremely long day.  The procedure took 4.5 hours and then I had to remain FLAT and couldn't move my legs for 6 hours (to allow the groin puncture site to seal up). It was brutal and I threw up in recovery due to the sedation.  I had a difficult time walking that night and part of the next day.

Regardless, prior to leaving we meet with the doctor again....and he said he would see me on Tuesday for Phase 2 of the procedure (kind of interesting considering the interns all said that patients typically return in two weeks). He confirmed he would be able to reach all of my liver tumors....so that was excellent and reassuring news.   I do have masses in my gallbladder (next to liver), but for my own protection and other medical reasons that I won't bore you with right now, he wants to do a separate procedure for just my gall bladder in about a month after I have fully recovered from this (or possibly even have it removed at a later point).

Anyway...for any of you Grey's Anatomy lovers, I thought you would be happy to know my doctor is known as "Dr. McDreamy" here at Northwestern - by all the young nurses on the floor. He is indeed easy on the eyes and it makes my visits much more interesting! :)

So....tomorrow (Tuesday) is the big day! I have to arrive at 6:30am for the procedure. It should be similar to last Thursday's pre-mapping day, but this time around with the radioactive beads. Here's to the beads destroying and zapping all of my tumor cells! Feeling hopeful and full of optimism.



Peace, Love and Miracles!
dawnbfox@hotmail.com

Brotherly love...what keeps me believing

Last week in a nutshell:

Monday:  CT-Scan
Tuesday:  Visit with doctor/CT-Scan results

• I was initially scheduled to start round 7 of my chemotherapy treatments, but due to the CT-Scan results we canceled my 7th and 8th round.  My scan showed the masses were stable but they didn't decrease in size.  My oncologist reminded me that overall I "had a great response to the chemo rounds".  The chemo had done its job and now it was time to move forward and see what the next step is.  Emotionally, I was a bit torn....the past round was extremely difficult for me physically and at one point I even conveyed to Kevin and my parents that I couldn't do this anymore.  It was certainly taking a toll on my body.  Yet at the same time, I had mentally prepared myself that I was going to begin another round that day....simply because I wanted to do anything and everything to shrink the tumors.  So....in the end, I was reminded we are ready to move on to the next step.  I have to believe it was a blessing in disguise.  I certainly enjoyed not feeling sick this past week due to the side-effects of chemo.  None the less, I have been a bit emotional and fearful of the unknown.  My oncologist ordered additional scans so we could make the best decision moving forward.

Thursday: MRI and a PET-Scan were scheduled

• Upon arriving at the hospital I found out the PET-Scan was delayed due to insurance red-tape.  The cost of the scan is $10,000 and the insurance company had to have a doctor/insurance peer-to-peer review due to the cost and the insurance company needed to make sure it was necessary since I have had countless scans in the last four months.  In the end, it was rescheduled for this coming Wednesday.  They did however approve my MRI for later that afternoon, so we stuck around the city for 4 hours (took a nap, tried to relax and enjoyed lunch at our favorite restaurant in the city).

I fortunately have excellent health care coverage, but it is so frustrating that people have to deal with insurance companies...especially when you are talking about serious health issues.  I feel for the people that do not have any insurance....it is truly a shame and heart-wrenching that the U.S. has such awful health care coverage (compared to other countries).  In my eyes, everyone should be entitled to health coverage.

This week in a nutshell:

Another week of trips to the hospital.  We will get the results from my MRI on Tuesday....Wednesday will be the PET-Scan...Thursday I should get those results...and then Friday I will meet with my other oncologist at the University of Chicago for his advice on my next step.  We are also trying to move up my appointments to see some of the top specialists for neuroendocrine cancer at Dana Farber Cancer Institute in Boston and MD Anderson in Houston.

Thank you for the continued prayers, thoughtful emails/cards, uplifting gifts, and the weekly meal deliveries from some amazing friends....I am truly grateful.

Looking forward to my parents arriving this evening...something about their presence makes the stress disappear and makes me feel more at ease.  So blessed to have them in my life.

Brotherly Love...What Keeps Me Believing

Peace, Love and Miracles

dawnbfox@hotmail.com

"I'm Gonna Love You Through It"

One of my friends recently sent me this video....brought me to tears.  Thank you to all of my family and friends who are truly "loving me through this cancer journey".  I couldn't do it without you....I love you.

Healing Retreat

It certainly was difficult leaving behind the gentle waves, the beautiful scenery, and the swaying palm trees of Kaua'i.  Our trip was filled with wonderful memories and plenty of relaxation....what I called my "healing retreat".

I managed to read 3.5 books (I highly recommend reading "The Help" before watching the newly released movie...so good), spent lots of time in the sunshine, enjoyed hearing the belly laughs of my boys, and simply enjoyed being surrounded by my family in such a breathtaking scenery.

Some of the things that made me smile along our Hawaiian vacation:

• on top of Waimea Canyon and overhearing Zevy ask his younger brother "isn't this beautiful, Cohen?"
• having my parents be a part of this beautiful trip
• the peaceful surroundings and gentle Hawaiian music
• seeing our first HUGE sea turtle in the waves
• receiving a "Live Strong" bracelet from a complete stranger who wished me well in my journey with cancer
• being with my family for ten glorious days

We returned early Tuesday morning and I immediately went in for my 6th round of chemo.  I spent the weekend recovering and am happy to say I am finally starting to feel like myself again.

Peace, Love & Miracles

Relaxing in Kaua'i

Cohen and Papa

Somewhere over the Rainbow

My favorite Hawaiian musician....Isreal "Iz" Kamakawiwo'ole singing "Somewhere Over The Rainbow".

Here's to dreams coming true!

CT Scan Update

Last week I had another CT Scan followed by my fifth round of chemotherapy.  My scan showed continued progress in the effort to reduce the masses....and my oncologist continues to be thrilled with my improvement.

Initially it was suggested that I would undergo 4 to possibly 6 rounds of chemo, but due to my progress and my ability to tolerate the high-dose chemo combination - I am now looking at possibly 8 rounds.  I have to admit, I was initially disheartened by the news only because going through chemotherapy is extremely difficult...physically, emotionally and mentally.  Despite my positive attitude, chemo weeks are trying and I have been known to have an occasional pity-party.  I quickly realized I just need to take it a day at a time and see this as a gift (for myself, my precious boys and my family).  I realize I am extremely fortunate...as most people aren't as tolerant as I have proven to be under this chemo combination.  I believe it has a little to do with my beautiful boys, having hope and faith, and the outpouring love from so many family and friends.  Thank you for continuing to keep me in your thoughts.

Today I was reminiscing and thinking of the little things I miss:

• smelling my freshly shampooed hair (I complimented a lady in a store the other day because her hair smelled so good....she probably thought I was crazy but it made me long for mine).
• being able to twirl my long curls when I am sleepy or anxious (however I have been caught doing it with my wig a time or two).
• wishing I wasn't viewed as someone who is "sick" when sporting my scarves....it is difficult being stared at in public but I am getting used to it more and more.  Cancer certainly has made me more aware and more empathetic towards others.

Now that round 5 is complete, I am off for two whole weeks.  I am counting down the days until we (my parents, the boys, Kevin and myself) leave for a peaceful and relaxing trip to Kauai, Hawaii.  This was initially suppose to be my "light at the end of the chemo road" retreat...but now due to more rounds on the horizon, I guess another trip will be in the works after round 8!  :)  Looking forward to spending 10 days on my favorite tropical island...cherishing the beautiful scenery, creating memories with my family, relaxing and celebrating our time together, and just being full of peace, love and happiness.

Kauai - my upcoming paradise retreat

Living Frame of Mind....Landscaping

While being in my "living frame of mind"....my parents were gracious enough to help me with some landscaping in our backyard over the weekend (ie. my lovely birthday gift from them was a trip to the nursery).  We spent 6 hours digging, planting and transplanting on a day when it was around 95 degrees.  Despite being a sweaty filthy mess, the end result was worth it.  I now have a backyard that is peaceful and relaxing....and something that I will enjoy looking at everyday when the boys are playing outside.

I celebrated my 39th birthday on Thursday.  It is hard to believe I am "almost forty".  My parents came up to celebrate with us....and we spent the day simply enjoying being together.  Cancer makes you aware even more that the little things in life are what truly matter.  I cherished every minute being with my family and I look forward to many more birthdays with them!

Peace, Love and Miracles

Round 4 complete

My apologies for the lack of updates lately...in a nutshell, I just finished my fourth infusion last week.  This past round took a toll on me a bit longer, but I am finally beginning to feel somewhat back to normal.  Prior to my next round (in two weeks) I will have another CT-scan to see the results from the last two chemotherapy rounds.  Keeping my fingers crossed for more positive results.

On a different note, many people have inquired about my prognosis with having stage IV cancer...so I wanted to address the elephant in the room.  For starters,  stage IV cancer simply means the cancer has spread to another organ(s):  in my case that is the liver and gall bladder with an unknown primary.  While one oncologist gave me "3 to 5 years" to live, the other oncologist never gave me a prognosis (he was also the same one who said from the beginning that I “would perform beautifully”).  He doesn't believe in statistics when it comes to cancer and I have to say....I am truly grateful for that ray of sunshine.  If your doctor pronounces a death sentence, how else can you have hope?  Many view a cancer prognosis as a "challenge or a death sentence"….I am clearly taking on this new journey in my life as a challenge.   

"In the face of uncertainty, there is nothing wrong with hope.  False hope is an oxymoron.  There can be false expectations, but hope is real.  It’s not about statistics; hope is necessary for survival."

In less than three months, I have truly realized just how important it is to stay in a living frame of mind.  It continues to move me forward, keep me searching, keep me strong, and keep me believing that it is possible to live.

Here’s to hope…and believing in miracles.

CAT (CT) Scan Update

Last Tuesday was an encouraging day...the results from my blood work indicated that my liver enzyme levels were back to normal (they were originally dangerously high back in April when this all began) and the results from the CT Scan showed a 30-40% reduction in mass size with just two rounds of chemotherapy.

I was extremely nervous going into the appointment...so it was nice getting some good news!  Especially after being bombarded the past two months and trying to wrap my mind around this whole cancer diagnosis/new journey in my life.

As my oncologist said, the CT Scan showed "stellar" results.  Keeping my fingers crossed for the remaining cycles, having hope and choosing to live.

Dawn Berlynn

Vision Board Project

I recently finished reading a wonderful book titled "Choose To Live (Our Journey From Late Stage Cancer To Vibrant Health)"....several phrases/passages resonated with me including the following:

• "When life and death are placed before us, we are to choose life.  By that, I do not mean merely to try to avoid dying, but to choose to live a meaningful life involving us in a demonstration of our love for ourselves and others.  When we live that way, our body knows we love our life.  It then does all it can to sustain us, heal our afflictions and wounds, and keep us healthy."
• "Hope is necessary for survival."
• "Whatever the mind can conceive and believe, it can achieve."  ~Napoleon Hill
• "Hope comes from daring to believe in miracles.  Daring to believe that you are worthy of one."

After reading the book, it then spurred me to finish something that has been on my never ending to-do list....create my very own vision board.

For those of you who have never heard of such a thing, "A vision board is a simple yet powerful visualization tool that activates the universal law of attraction to begin manifesting your dreams into reality.  The concept of the vision board (also known as a goal board/goal map) has been around for generations, but it’s gained a renewed interest and popularity after success expert John Assaraf related his story of using vision boards to achieve his dreams in the best-selling book and DVD documentary The Secret (also viewed by millions on Oprah)."

"A vision board is simply a visual representation or collage of the things that you want to have, be, or do in your life. The purpose of a vision board is to activate the law of attraction to begin to pull things from your external environment that will enable you to realize your dream.  By selecting pictures and writing that charges your emotions with feelings of passion, you will begin to manifest those things into your life."

The theme around my vision board was "Choose To Live" and "Hope".

Peace, Love & Miracles

My Vision Board ~ Hope, Miracles, Believing and Choosing to Live

Second Round of Chemo Update ~ Memorial Day

I fortunately seem to be tolerating my chemotherapy treatments well.  After this past infusion, I only felt bad for two days and that was only due to my white blood cell injection.  I received an injection of Neulasta - which stimulates the bone marrow and promotes the growth of white blood cells called neutrophils in your body.  Unfortunately, one common side effect is severe bone pain....and sure enough I felt achey for a couple of days.

None the less, I was only on my chemo meds for 5 days and will be med-free for 17 days prior to the start of my third chemo round (one extra week of being med-free when comparing it to my first chemo round)!

Next Monday I go in for a CAT scan to see what progress has been made with just two rounds of chemotherapy.  Keeping my fingers crossed!  As of now, our plan is to undergo six rounds of chemotherapy, with a CAT scan performed after every two rounds.  My third round of chemo begins next week, so I will be at the hospital every day (due to the scan, three days of chemo treatments, and then fluids/another possible WBC injection).

Many people have asked what happens after the six chemotherapy treatments....if needed, we plan to consult with the top neuroendocrine cancer specialists in the United States (possible consulations include:  Johns Hopkins Hospital in Maryland, Dana-Farber Cancer Institute in Boston, Cedars-Sinai Hospital in NYC, MD Anderson Cancer Center in Houston, a liver transplant specialist, Mayo Clinic in Minnesota, etc...).

For now, I am just taking it day by day and living by my oncologist's words regarding his take on how I will respond to chemotherapy...."you will respond beautifully!"

Peace, Love & Miracles

Memorial Day Parade ~ New Wig

Second Round of Chemotherapy

Round two is now complete!  I am feeling much better this time around....still a bit sleepy, but nothing compared to the first round.  Will wait and see how this weekend goes, but so far I have been more active and have only taken cat naps during my treatments.  Thinking it may have to do with having a better understanding of all my meds (what works and what doesn't).

I received fluids and a white blood cell injection this morning (to stimulate new white blood cell growth) and I am now off for two weeks!  Finished the afternoon in the city by pampering myself with a Reiki (energy healing) massage.  Trying to do anything and everything to balance my mind/body connection.

Thank you for the continued thoughts and prayers.  I am truly blessed.

Shaving Party

My (last) Saturday evening in a nutshell:

• Donating some beautiful hair to some special little girl out there.
• 4.5 hour process of donating ponytails, getting short haircuts, shaving my head and finally styling my new wig.
• My dear friend Karen supplied a beach scented candle, wine, chips/dips, upbeat music and encouraging support that meant the world to me.  
• Although an emotional evening, there was much more laughter than tears and I was surprisingly strong through the whole process.  Thanks to Karen, she kept me smiling and distracted, especially when her scarf caught on fire...luckily it wasn't my new wig! 

The next day I was a bit more insecure and was fearful of how the boys would react....despite them cutting a strand of curls the night before they went to bed.  To my surprise, Zevy greeted me with the most beautiful accepting smile and is now calling me "Boozer" from the Chicago Bulls.  Perfectly okay with me since he is my favorite player.  :)  Cohen on the other hand, is still adjusting...he wants my "old hair back," and prefers when I have my wig on.

Nonetheless, I find myself going "au natural" most of the time at home.  I think it is a good lesson to teach the boys that beauty comes from within...it should be recognized as something other than a person's appearance.

Physical beauty is temporary for all of us, but the beauty inside of our hearts is eternal.

To cutting old memories off and beginning a new chapter in my life.

Peace, Love & Miracles,
Dawn Berlynn

Styling my curls one last time!

Bald and Beautiful

Portraits from our family vacation in May

"Faith is taking the first step, even when you don't see the whole staircase." 
             ~Martin Luther King, Jr.

Peace, Love & Miracles

Beach Therapy

We just returned from a relaxing and loved-filled (9 day) family vacation.  The beach, warm weather and being surrounded by loved ones definitely soothed my soul....and I cherished every moment of it.

I am physically feeling great (like I am not even "sick") and have been medicine free for the last five days!  Hoping this is how every chemo round will be (difficult for the first five days and then better and better each day after). 

I go in for blood work and fluids tomorrow....and then next week I begin my second round of chemo.

Peace, Love & Miracles

Papa and the boys

Dawn & Kevin

Dad & Dawn

Believing

"Healing is an inside out process.
It begins in the heart with a glimmer of hope.
The more we trust in it, the stronger it becomes until we are mended - body and soul.
Good things happen when we believe."

Update and Review

The PET scan results came back on Friday and they have not been able to find the "primary" tumor which has metastasized to my liver.

Originally, when I was diagnosed, they took a biopsy of my liver because this is the organ which they could see masses in.  The biopsy revealed neuroendocrine cancer cells, which were testing positive for a "marker" called TTF-1.  This marker indicated that the primary (or original) cancer site was either in the lung or the thyroid, but both of those tissues have turned up clean.

Since then, we have learned that sometimes the cancer will test positive for TTF-1 but not originate from those two organs, and instead be located in the "gut."  When the doctors say "gut," they mean:  pancreas, intestine, colon, ovaries, or cervix.  However, again, the PET scan, MRI, CAT scan and octreotide scans have shown nothing anywhere but in the liver.

The doctor said on Friday that in approximately 15-20% of neuroendocrine cancer cases, the primary is never found.

This may sound very confusing, because it is... and we are consulting with two oncologists to get the best treatment and the best expertise possible, in trying to figure this all out.

In the meantime, last week I did my 3 days of chemotherapy:  Tuesday, Wednesday and Thursday (I now have two weeks off before starting my second round of chemotherapy).  It was extremely difficult, due to the fatigue from the chemo, and the zombie like effects of the drugs they use to control nausea.  However, by Monday I was starting to feel better and am happy to report that I was able to travel on a trip that had been planned months ago, with my parents and family to Gulf Shores.  So far I am feeling better each day.

One of my good friends told me that if I was going to feel crappy due to the chemotherapy, then why not do it on the beach.  I agree, and took her advice to heart.  It seems like good medicine to be in the sun, listen to the waves, have your feet in the sand and to be around loved ones.


Dawn Berlynn

Sleeping on the beach.

Chemo and PET Scan

The results from the octreotide scan did not show that Dawn's cancer began in her lungs, as the oncologist suspected. So, today she had a PET scan, which you can read about by clicking here.

This is being done to hopefully find out exactly what the primary source of the cancer is, as it apparently does not originate in the liver, but has simply spread there.

Additionally, she had her 3rd consecutive day of chemotherapy, and will now be off for two weeks. We have been told to expect her to be very tired within a few days, as almost all chemotherapy patients experience intense fatigue that is not helped by sleeping more hours.

Again, Dawn wanted me to be sure to thank everyone for the continued support and love she has been the recipient of since this all has unfolded.

Kevin

Chemotherapy Day 1

I just wanted everyone to know that Dawn had her first administration of chemotherapy today.  She was (of course) brave and strong, and is now resting up.   She will be having more chemo tomorrow and Thursday, and then have two weeks off.  Below is a photo I took of her during her treatment.

Thank you all for your well-wishes and everything you have all done to support Dawn during this time.  I know it means a lot to her.

Kevin

Fell asleep during chemo treatment #1 ~ while listening to spa/relaxation music

Easter 2011

Where to begin...

On Wednesday April 6th, I made an appointment with the doctor to check out some pressure I had been feeling just below my right rib cage.  I went into the 10am appointment assuming (at worst) it might be an ulcer, and at 5pm I was told after an ultrasound and blood work that I had "multiple masses in my liver."

The next day an MRI was scheduled, the day after that, a liver biopsy.  On Wednesday, April 13th I was diagnosed with an extremely rare metastatic cancer: neuroendocrine tumor.  Since that day, I have been through another MRI, a CAT scan, three days of octreotide scans, all to try and find where the primary tumor that spread to the liver is located.

I have met with an oncologist at Northwestern and one at University of Chicago.  The origin of the primary tumor is suspected to be the lung, but is unknown as of now.  What is known is that the cancer has spread to my liver, and that I need chemotherapy right away.  It begins this Tuesday.

In two short weeks I have had a lot to wrap my mind around.  I am blessed with a supportive and loving family (as well as precious friends) who are taking care of me every step of the way.

As my doctor said, "the boys will get you through this."

Love,
Dawn Berlynn

Live Good & Keep Believing

At hospital - waiting to meet with the oncologist.

At hospital - prior to octreotide scan

Being a Survivor

"I have lived, laughed, loved and lost.
 I have cried, mourned and grieved,
 hoped, prayed, and healed.
 I have found strength and true beauty.
 I am a survivor."
                            -author unknown