Goodbye 2016… Hello Forever

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Hi friends.  I started writing this blog June 2015.  Today that seems so long ago.  Yet it was still more than 8 months after I was diagnosed with Multiple Myeloma.

When I first learned the news of my diagnosis in October 2014, very few people knew that I was battling stage 3 Multiple Myeloma, the most aggressive stage of this type of blood cancer.  Upon receiving the cancer diagnosis, I wanted it to remain private.  My treatment at the beginning stages would make me sick, but I wasn’t going to lose my hair.  I looked normal and healthy on the outside, yet the cancer was eating away at my bones from the inside out.  Scans showed my bones looked like swiss cheese holes.  I had holes in my ribs, spine, arms, pelvis, and head.  I continued to work full-time as the President/CEO for United Cerebral Palsy of Orange County scheduling chemo and radiation around my work schedule.  I also decided to not tell our daughter Jadyn until the treatment got so severe that I could no longer keep it from her.  I also didn’t want pity or gossip.

However, by the time that I was about to embark on a grueling bone marrow transplant/stem cell transplant, I needed to share the news.  Disclosing a cancer diagnosis—and all that goes with it—is never easy, but it is necessary. My family and I would need emotional and physical support for the long haul ahead.  So the blogging began as a way to keep people posted on the progress, setbacks, heartaches, and triumphs to ridding my body of these ugly rogue cells.

Abruptly I stopped blogging in February 2016.  I was just discharged from City of Hope.  The next few months would be hell.  I had lost my hair a 2nd time.  The 1st being when I had high dose chemotherapy to build and produce my own stem cells and harvest them for my future transplant.  Because I had no immunity I was isolated to my home where I slept for most days trying to regain my life and some energy back.

img_1598I saved my energy for playing with Jadyn when she came home from school.  I weighed less than 100lbs soaking wet.  No hair.  No appetite.  But I wanted to give my little girl as much normalcy as possible.

For almost four months, I lived in a bubble in my home.  During that time many complications would arise which would force us to drive back to City of Hope, sometimes in the middle of the night and be admitted.  This happened at least one dozen times through the first few months post-transplant.

And then showly, miraculously I began resuming and reentering the life of the living for brief moments in time, just as long as I had a gallon of hand sanitizer and face masks.

We couldn’t fly, so we started with regular mini vacations to San Diego.  Each one unique and a great distraction from cancer.

With wig or hat and wig covering my baldness (vanity), I started attending programs at Jadyn’s school.  Just like all the regular mommies.  Shabbat services, classroom presentations, school events.  I was all but briefly in the land of the living.
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By April, just in time for Mother’s Day, Jadyn and I ventured out so I could reconnect with my creative side.  We did a beautiful photo shoot capturing special memories to create gifts for grammy, who had done so much for me over the course of this journey.

We played numerous silly games at home.  I guess there is no vanity when playing “Pie in the Face” or “Fibber”.

By May, I was starting to feel like I was up for more creative work and began designing the interior and landscaping for our home.  A home which was ready for move-in at the end of 2014, but given all that we had going on, I didn’t have the energy or the desire to work on.  I guess that’s what happens when you’re fighting for your life.  Now we have landscaping, and some furniture and decor.  It’s starting to shape up and feel like we are making a warm loving home for our family.

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Little Mermaid at La Mirade Theater

June, my birthday!  A cause for much celebration.  Recent scans and blood work showed that I was in clinical remission.  It felt like the whole month was a celebration. Going to theater, dinners out (for the very first time), another trip to San Diego.

July, 10 days after my birthday Jadyn turned 7.

Ok, Ok, I went over the top.  We threw her three formal birthday parties, took her to American Girl Doll for another celebration, and went away to San Diego with cousins for Sea World, San Diego Zoo, and Wild Animal  Park.

I also started back at work, all be it part-time at United Cerebral Palsy of Orange County.  What a special place to work with such caring individuals.  The mission of helping children with special needs kept the focus away from my health and on the children, my staff, our Board.  I had been away for 10 months time.

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Elizabeth Beas (Director of Development) and I ride the Pelican Hill Golf Course at the 22nd Annual Autumn Classic benefitting UCP-OC.

And then with my oncologist’s blessing, I am permitted to take a plane trip, and allowed to swim but only in the ocean.  Pool swimming will have to wait until I reach my 1 year post transplant (January 29, 2017).  We chose Maui, Hawaii.  For more than a week we play, snorkle with turtles, parasail, swim in the waves, eat amazing meals and once again celebrate life.  I finally have some hair at this time, and dyed it platinum blond.  I was still not comfortable sporting the platinum hair all the time, so would alternate with wearing the wig too.

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By the end of Summer, Jadyn starts 2nd grade.  Another monumental moment to be able to take her to her first day of school.
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Then time starts to fly… Halloween..


We begin inviting friends over for parties.  We host Thanksgiving and Hannukah.  Adam makes amazing meals for our family and friends. And we take another plane trip, this time to Cleveland, Ohio for Adam’s best friend’s wedding.

So as I close out this blog… I am grateful to say goodbye to 2016 and welcome in a new year.  A year filled with possibilities that I didn’t imagine possible just two short years ago.  There are so many people who lifted me up during this journey, whose love, support, guidance I will still need.  The transplant is over, yet I still have “maintenance” chemotherapy every other week.  And my next big set of tests are scans and a bone marrow biopsy set for January 11, 2017 at City of Hope.

Today I am grateful for my past which led me to this moment where my dream journey begins anew.  Cancer is just a chapter in my life, not the whole story.  I would not be here without my incredible, selfless, compassionate family.  I would not be here without my friends, doctors, nurses, and the kindness of strangers.  Your friendship is a special gift.  Generously given.  Happily accepted.  And deeply appreciated.

We are about to ring in a new year.  I am alive, healthy, and most importantly, cancer free!

Goodbye 2016… Hello Forever!

 

Confinement for Day +9

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Big Super Bowl and I slept  all day, with the exception of taking a shower (they made me do it).  Now when Adam reads this he’s going to laugh because he knows that it’s only a few games that I’ll watch during season.  OK, really nunn.  We had a Super Bowl Party at our house.  And I didn’t have to raise a finger.

I want to spare you the details of every  symptom expected at Day 9. Click here for a more complete listing of symptoms.  Guess what?  I have experienced almost all to textbook. I took a shower today at the advice of my nurse Meg.  I just finished it and man I am exhausted.  I guess it is challenging on my body when literally my white blood count is zero.

Before I go take another nap, I wanted to share something.  After all I’ve been through I can see the light of sunshine that is within grasp.  I need to be patient during these next few days of misery.  Because the stem cells are engrafting in my bone marrow.  They are working.  The best is yet to come.  I can feel it.

 

 

Rock Bottom

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In the last posting I was sharing that from Day +4 through Day +10 things get rough. They weren’t kidding.  It’s why you haven’t heard a peep from me.  Today is Day +7.  So a few more days to go.  My white blood count is at 0.  Nothing.  My hemoglobin is almost to a place where I’ll need a transfusion.  My platelets too.  Tomorrow, I am guessing I will get two transfusions.   Oh, a huge shout out to those of you who donated blood or platelets this time or last time.  It is comforting to know that when I need them, they are from you. Please know how appreciative I am.

So yesterday I had no energy.  My white count yesterday was 0.2, so almost to zilch.  I pretty much slept the entire day.  I tried watching “Martian”, but only got half way through.

And to add a little cherry on top, I have tested positive for RSV.  Respiratory syncytial (sin-SISH-ul) virus (RSV), is a very common virus that causes infection of the lungs and breathing passages, is a major cause of respiratory illness in young children.  So you’re saying that I have a common cold with no way (immunity) to fight it.

Everyone who comes to visit in my room has to gown up, put on gloves and a mask.  It’s a really good look and definitely new fashion statement.  And because I am so susceptible to catching anything and everything, the doctors really want me to stay in my room.

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Missing the world outside my hospital room.

 

Day+1, Day+2, Day+3, entering Day+4

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I can’t believe that I’ve been in the hospital for a week.  I have been feeling pretty good. They call each day after your transplant Day +1, Day +2, etc.  So today we’re starting out Day +4.  I still have at least two more weeks in the hospital.  This is the calm before the storm.  It’s not sophisticated, but the graph below shows the sad face (that’s the worst part of treatment) going from about Day+4 through to almost Day+12 where there is a happy face.  WBC stands for white blood cells, D/C is discharge.

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Everyone who comes to visit must wear a mask and gloves.
I’m not allowed hugs or kisses.  That’s hard.

So nothing earth shattering today. My mom has been amazing hanging out with me sleeping on a terrible attempt at a bed.  Adam has been exceptional taking care of Jadyn and coming to be with me.   I am very grateful for all I have.

I thought I would leave you with a few
ways I’ve decorated my new digs.

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Jadyn made me a tissue paper flower ball.

 

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A Note from my rock and cheerleader

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Hi everyone – I know I’ve spoken with some of you recently, but wanted to make sure everyone was up to speed with Deb’s status/progress.

She was admitted on Tuesday to City of Hope to undergo her stem cell transplant, the same one that got derailed last summer after she contracted the crazy bacterial infection from the catheter they were going to use.  On Wednesday, they inserted the new catheter in a minor surgical procedure that went smoothly.  Thursday, she received her high-dose chemotherapy – the one I’ve been referring to as “Nuclear Chemo” called Melphalan.  For some reason chewing ice chips diminishes the chances of mouth sores.  So Deb alternated from ice chips to popcycles before, during, and after the chemo was stopped.

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The next day is referred to as “Day Zero” or your second birthday.  The stem cell transplant will hopefully be a “cure” for her.  Deb is using her own stem cells which were collected over the summer.  They have been sitting in a specialized freezer waiting to be reinfused.  Deb received two bags of her stem cells.  During the infusion she did not feel good.  But the mission was accomplished.

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One Stem Cell Bag

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Deb’s Nurse hooking the first stem cell bag up.

Compared to her hospital stays over the summer, things are progressing remarkably well and smoothly!  She’s had a little bit of nausea and she’s been super tired, but her spirits are up and she’s just progressing through her treatments.  She’s already had lots of visitors, and is even walking laps around her floor (8 laps = 1 mile)!  So far, it’s gone really well (knock on wood!).  Her nurses have also been great; it’s very clear that during this stay her condition is much more in their wheelhouse.

Over the next couple of days, the doctors and nurses have forewarned that she’s going to start feeling worse as her immune system bottoms out and then starts to recover from the Melphalan.  We’re taking things one day at a time and are hoping that it continues to go without surprises.  Hopefully, she’ll be recovered enough and her immune system strong enough to come home by the week of Feb 15th…maybe sooner, as Deb is an extremely tough woman and will likely be marching out of the hospital as soon as she’s feeling up to it.

Thanks from both of us for all the love and support!  As a reminder, Deb can’t receive any flowers or outside food.  Jadyn and I are looking forward to having her back home soon, and we’ll keep you all updated over the next couple of weeks.

Lots of love,
Adam

 

 

Day Zero Moves to Tomorrow

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“Mom, is that woman an alien?”

“No, Charley.  I think scientists have created a human straw.  All she needs is a bright paper umbrella for a hat and she could pass as the world’s largest pina colada,” replied his mother.

They are talking of course, about me.  Last night I had surgery to place a huge thick central line in my internal jugular vein. It looks like I have two large sticks that protrude from my neck right into my face.  Take a look…

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Pretty, huh?

At least I can smile about this.

At least I can smile about this.

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These lines will be used when the doctors reinfuse my stem cells tomorrow.  You need a large opening/line to keep from damaging the fragile cells.

So back to today.  I had a small surgical procedure done at bedside to insert what is called a PICC line.  A PICC line is a long, thin, hollow tube that a doctor or nurse puts into a vein above the bend of your elbow. It is used to give you chemotherapy and other medicines. It can stay in place until your treatment is over. The PICC line was inserted because once I get my stem cells tomorrow, hopefully they’ll remove that huge line in my neck.

So, #1 PICC line surgery today, followed by #2 high dose chemotherapy.  The nurses load you up on premedications like two different steroids, and four anti-nausea meds.  Then they bring in the bag of Melphalan (high dose chemotherapy) whose job it is to kill any left-over Multiple Myeloma cancer cells.  It also kills your healthy cells too.  So over the next few weeks, I wlll be super sick.

Silver lining.  Melphalan is known to cause really painful mouth sores.  That’s not the silver lining.  The silver lining was I got to eat six popcycles and chew on ice for about 45 minutes.

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So, we’re just wrapping this up for the night.  Tomorrow will be “Day 0”, also known as my second birthday when they reinfuse millions of baby stems collected from my body over the summer back into me.  Let’s all pray that this treatment (Stem Cell Transplant) will cure my cancer.

Good night!  Sleep tight.

Stem Cell Transplant is Here!

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Well, guess where I am today?  No, not getting a massage or my nails done. Although, I’d much rather be doing that.  I’m in a hospital room at City of Hope getting ready to finally have my Stem Cell Transplant (SCT).

Adam and I Checking in to City of Hope

Adam and I checking in City of Hope

So here’s the lingo.  This is sure to impress your friends…. In order to prepare my body to receive the stem cells I must first go through a process called a “Preparative Regime” which will include giving me extremely high doses of chemotherapy to destroy any remaining cancer cells in my body.  This is called “Day -1” or “Day Negative 1”.  
Today is Day -1 for me.

Here’s the plan for today (Day One):  I need to have a central line surgically implanted in my neck.  It was supposed to be done last night but they wanted to do the surgery with minimal anesthesia in my hospital bed.  I of course freaked out.  So at 3:30 today, I will go in the operating room and be sedated and have the central line implanted in my neck.  My mom and Adam are here with me.

If that’s not enough fun for the day, I then get high dose chemotherapy this afternoon or evening depending when I come out of surgery.  The chemo is called Melphalan.  Side effects are what you’d expect.  I’m keeping my fingers crossed that I will be in the minority when it comes to getting sick and just breeze through the high dose chemo.

Tomorrow is Transplant Day or “Day Zero”.  I will get hooked up to a machine that will reinfuse millions of healthy stem cells back into my body.  My family as been calling these millions of stem cells, “minions” like the movie.  We are praying these tiny loyal servants race through my entire body and become my new healthy cells.

Some info for Tomorrow’s Transplant Day or “Day Zero”:

  • The transplant isn’t surgery but instead, new healthy cells are given through a central line.
  • The cells arrive in blood bags, similar to the ones used for blood transfusion.
  • I will be in my hospital room and awake during the transplant process. The cells are infused (put into your body) through an intravenous (IV) line, most often through your central line.  The procedure is like a blood transfusion.
  • The transplant team will watch you closely while I am getting my new cells.  They will also explain what to expect, how long the infusion might take and how I might feel.
  • The minion cells ‘know’ where they belong in the body. They move through your bloodstream to settle in your bone marrow. This is where the cells will begin to grow and produce new red blood cells, white blood cells and platelets. When this happens, this is called engraftment.

I want to thank all of you who have generously donated blood or platelets on my behalf. You are giving me such a huge gift.  I can’t thank you enough.

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And I want to thank our extended family from TVT, where Jadyn goes to school.  The moms surprised me with a beautiful box filled with gifts.  Please know that I am filled with gratitude and love.

I will have much to share tomorrow, but I leave you tonight with a picture that makes me smile.  This is from Big Bear.  Our family went there last weekend to bond and relax before me being away for three or so weeks.  Here’s to making snow angels.

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