Tag Archives: stem cell transplant

Bubble Girl

Where have I been this past month and a half since my last blog entry?  Well, I’ve been in my own little world, that’s where I’ve been.  I’ve been Bubble Girl.  Yeah, I’ve been stuck in the hospital most of the time with my visitors having to wear masks and gloves and cover gowns but that’s not exactly what I mean.  The weeks leading up to my transplant, I kept asking my doctor questions if I’d be treated like a ‘bubble girl’ during my stay in the hospital.  Little did I know, I would end up turning myself into just that.

Everyone could see me but they couldn’t really see me.  What truly was a joyous occasion on November 16th took a frightening toll on my physical health and consequently on my spirit and emotions.  I stopped writing.  I stopped talking.  I stopped eating.  I spent entire days in bed.  I wouldn’t leave my hospital room.  I would even say there were days when I didn’t smile.  I cried endlessly.  I spent many sleepless nights wondering when it would all be over.  ‘Probably never’, I would think to myself.  I kept everyone at arm’s length, tucking myself away into my own sanitized, little space.  I built my own emotional bubble around myself.  I was Bubble Girl and I didn’t care.

I’m not gonna go into detail of the horror of going through a stem cell transplant just yet.  That’s gonna take a few entries and, frankly, I’m not ready to go there.  I’m still sitting in the hospital as I write this and I need time to sort it all out for myself before I begin to recount all the sordid details for you.  But, believe me.  Its gonna be GOOD.

This blog entry, in particular, is more for my benefit if I really think about it.  It feels good to get some of this off my chest and finally step out of this emotional plastic bubble, good to finally be able to talk to people like a somewhat normal person again.  How did I get rid of my bubble?  Because since my transplant, I’m finally feeling better again.  I’m finally feeling more like myself, like Cristina.  I can finally see that light at the end of this still stretching tunnel.  I can’t say that Bubble Girl won’t be back, but I can say that she has definitely taken a hike.

Its amazing what feeling better physically can do for a person.  Its easy for someone looking in from the outside of someone’s bubble to say the typical:  “Oh, this is only temporary.  You’ll feel better soon.”  Or my favorite, “You’ll look back on this one day and won’t even remember how bad it was.”  When you’re in that position of constant pain and suffering, there is no end in sight.  The struggle itself should never be belittled.  And the struggle is something that you never, ever forget no matter how hard you try.  The constant lingering, tingling sensation in my fingertips from the latest effects of chemo is just one of the things that doesn’t let me forget.

Enough of that for now because its finally time for some good news.  Make it GREAT news.  Today marks Day 43 since my stem cell transplant.  Its been forty-three days since I was given my second chance and I’m almost at the halfway mark of my stay here in Houston.  And, Day 43 now marks the day I first got the best news since my transplant.  After my first PET scan, full CT scan, and bone marrow biopsy post-transplant, my attending doctor told me this morning that there is “no sign of disease”!  He paused so that I could process the news and I did not cry which is a first for me.  I have always gotten emotional when I get any news about my health, be it good or bad, and for me to not have cried is in itself a HUGE victory for me.  Instead I smiled a big, toothy smile and he smiled the same big, toothy smile back at me.  I looked over at my mom’s big, toothy smile.  It was a big, toothy smile-fest and it was perfect.  I don’t have to cry every time I’m happy.  Smiling is perfectly acceptable.  “For real?” I asked.  “Yup!” he replied.  I took a deep breath and said, “Yes!”  And that was it.

I’m glad there wasn’t more fanfare in that moment.  That was exactly what I needed after the over-the-top, emotional roller coaster I’ve been on for the past two years.  Just a quiet moment in time that I could revel in and just be happy.  And to add the cherry on top, I might be discharged from this latest stay in the hospital by tomorrow.  Even if I’m not, Day 43 already has a heart by it in my calendar.

Happy New Year!  Bubble Girl out.

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Back on the Road to Canaan

The last two days have been great.  Actually, they’ve been pretty perfect and today was just the culmination; the cherry on top.  I’m floating high above the world on cloud nine and I don’t want to come down.

My husband, German, and I left Corpus Christi for Houston on pins and needles on Tuesday night.  We headed there with high hopes for good results from the scans that I was going to have on Wednesday.  We arrived in Houston, checked into our hotel, and made our way out to dinner with a couple of good friends.  We ate dinner, had some pie, and laughed with our buddies to keep our minds off the impending tests the next morning.  Tuesday had ended successfully despite anything Wednesday had in store for us.

Wednesday definitely had it in for us but it failed miserably in stealing our joy.  We made our way to MD Anderson right on time for my first appointment at 9:30am for lab work in the Main Building.  Fifteen minutes later, I was done.  Since my next appointment for a CT scan was not for another hour and a half, I decided to take German on a tour of the MDA campus to kill some time.  We stopped in the gift shop and I got an MD Anderson hoodie that I had been eyeing.  We took the Skyway shuttle over to the other side in the Mays Clinic since I figured we would be back in time for my CT.  Wrong.  This is where Wednesday decided to try to get us.

As we hung out by the Tree Sculpture in the Mays Clinic, I took a look at my schedule just to make sure what time we had to be back.  I noticed that my schedule listed an address that was not the address of the Main Building.  I walked over to the information desk and the volunteer informed me that that address was not the Main Building and that we would have to catch the patient shuttle to get there.  “Oh and it looks like it gets here in three minutes downstairs,” he added.  German and I looked at each other and without a word, we made a run for it.  Unfortunately, we arrived downstairs just in time to see the back end of the shuttle leaving around the corner (insert ‘Saved By the Bell’ theme song here).  We shrugged it off and sat down to wait for the next one that would come around again in about 20 minutes.

It was after about 10 minutes waiting there that I realized that I no longer had the bag from the gift shop in my hand.  I’d left my awesome new hoodie upstairs by the Tree Sculpture in the whole shuffle to get downstairs!  Cue German running back upstairs to see if he could find it.  He came back a few minutes later, bag in hand with my hoodie, safe and sound.  Phew.  The shuttle finally made it’s way back and we almost left the bag a second time on the bench we were waiting on.  Forgetful much?

We arrived 30 minutes late for my CT but we made it.  Still, we were in a great mood.  I drank my berry-flavored contrast, got my I.V. (not without it burning), and got my CT scan.  Three hours later, we were leaving the clinic but not before I noticed German’s wallet on the seat where he had been sitting.  Wow, Wednesday.  Really?  Nice try.  Unphased, we hopped back on the shuttle and went back to the Main Building to get our car.  We spent the rest of Wednesday at the Houston Zoo and went out on a dinner date  complete with live music and great food.  We went to bed completely exhausted yet content from spending the day together.  Even though Wednesday had tried to sabotage our day, it was sadly unsuccessful.

It was unsuccessful in stealing our joy because we’ve learned.  We’ve learned not to worry about what tomorrow brings.  We’ve learned not to sweat the small stuff.  Worry doesn’t change anything but attitude can.  Worrying is a ginormous waste of time and we had instead opted to spend that time enjoying the beautiful weather and each other.  We went to bed fully expecting good results and nothing less.  That’s exactly what God gave us.

My first appointment this morning was with my stem cell doctor, Dr. S.  His sunny face as he walked into the exam room left no doubt this time.  I’d never seen him smile so big.  This time was different.  This time it was great news.  He immediately let us know that the radiation had done it’s job.  The mass in my chest was gone and he could now proceed with the stem cell transplant!  Talk about the weight of the world off of our shoulders!  God has begun to lead me out of my desert and back onto the road to my Promised Land, my Canaan.

My second appointment with my lymphoma doctor after that was more of a continuing celebration rather than a follow-up.  He came in with his assistant, both of them beaming from ear to ear.  They’d never met my husband and after the introductions and required jokes about German being a figment of my imagination, all we did was rejoice and bask in the awesomeness of the news for the rest of the appointment.  His assistant printed out copies of the before and after scans as a souvenir of sorts.

Before radiation: This CT scan view is as though you’re looking through the top of my head down into my chest. The mass is circled.

After radiation: Yesterday’s scan shows the mass is almost completely gone and there is now an empty space where the largest part was. The ‘X’ marks what’s left of the mass.

“I fully expect to see you back here in a few months in remission,” my doctor said as we were leaving.  So do I.

At this point, my father and I are expected back in Houston by Wednesday, Oct. 24th to begin preparations for the transplant.  My father will undergo extensive testing and surgery to harvest the bone marrow I need.  Since my father is a half-match, they need to use his bone marrow instead of just his stem cells to give me more of a chance for success.  Meanwhile, I will undergo chemotherapy that will stop my own marrow production in order to replace it with my father’s.  Dr. S. expects to have the transplant done within the next two weeks.  I will be spending at least the next four months in Houston starting Wednesday.  Thanksgiving, Christmas, and New Year’s will be spent there but I’m ok with that.  What comes next is not going to be at all easy, but it’s a means to an end.

After being on pause for almost two years for this, I’m on fast forward all of a sudden and it is WEIRD.  German and I cried tears of joy and almost disbelief at our good fortune as we drove away today from MD Anderson.  I will enjoy every minute of my last weekend back home with my husband, my family, my friends, and my dogs.  I am back on the road to Canaan.  I better pack my big suitcase this time.

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Don’t wanna be your monkey wrench.

A lot can happen over three days.  Three days, that’s all it took.  I’ve been here in Houston for those three days and it’s been a whirlwind of news, change, and emotions.  I knew it was going to be a bit overwhelming but it’s turned out to be more of a game-changer than anything.  I could never have predicted what has transpired over the last 72 hours.

When I left my hometown of Corpus Christi three days ago, I was a month out of my tenth round of intense chemotherapy.  I was heading back to MD Anderson in Houston to see if I was in remission yet to be able to receive my stem cell transplant.  My one and only sibling, my little sister Carolina, had been tested to see if she was my perfect match for the transplant.  I’d been told that she is not my match and they would have to begin the search for a donor through the national bone marrow registry.  I received the call on a Friday  while I was driving and I barely made it home.  I was crying so hard I had to hang on to the back of my dining room chair to try to catch my breath and to keep from crumpling to the floor.  Both my sister and I had been so hopeful that she’d be my match, I couldn’t bring myself to tell her the news myself.  My husband had to call her and give her the news through tears and heartbreak.  The three of us were heartbroken yet again.

Despite the setback, I set off for Houston with my parents this time with positivity and no tears.  I didn’t cry when I told my friends and family goodbye, when I hugged my dogs, or even when I waved to my husband as I slowly backed my car out of the driveway.  I left in complete peace, in stark distinction to the last time I’d left for Houston.

Upon arrival, Monday was more of a ho-hum day at MD Anderson what with the usual tests done to check if I was in remission.  I spent all day there with blood work first thing at eight in the morning, then a PET scan, and finally a CT scan.  My parents and I left the hospital at 5pm tired and hungry yet hopeful for good news the next day.

I should have just stayed in bed on Tuesday morning.  Our first stop was with my lymphoma doctor for the much anticipated results.  I’ll call him Dr. L for lymphoma.  And for privacy reasons, duh.  Dr. L walked into the exam room and got right to the point.  Bad news:  I was not in remission.  He explained that although the tumor in my chest was still there, it hadn’t grown.  It hadn’t shrunk either.  That was monkey wrench #1.  Monkey wrench #2?:  I now needed radiation and lots of it.  They were changing treatment since the cancer hadn’t responded to chemotherapy.  I’d been hoping I would be done with all this cancer junk at least by Christmas this year but with 4 weeks of radiation being thrown in before the transplant, that was no longer going to happen.  This monkey wrench is gonna have me spending my Christmas in a hospital room this year.

I now have a 3rd doctor to add to my roster at MD Anderson:  my radiation doctor.  Let’s call her Dr. R for radiation.  I think you’re getting the picture now with the doctor aliases.  I was sent down to see her immediately after my visit with Dr. L.  She’s very beautiful and very pregnant.  I instantly liked her.  Although I’m not looking forward to radiation in the least, I’m happy to have her as my doctor for this very scary part of my treatment.  She greeted my parents and I warmly and she calmly explained everything that was about to happen to me over the next few weeks.  They would work to shrink the tumor with radiation in order for me to have my stem cell transplant.  Dr. R showed me the pictures from the PET scan the day before and I was able to view the tumor in my chest for the first time ever.  It was eye-opening to say the least.  I had been pointing to the wrong spot on my chest this whole time when people asked me where the tumor was.  What a colossal dummy.

Dr. R went down the list of the possible short-term and long-term effects and described everything down to the last detail.  Skin redness and increased risk of heart problems and breast cancer are just a few of the lovelier side effects.  She let me know that I’ll be having radiation there with her for the next 4-5 weeks, Monday through Friday, and that I’ll be able to go home on the weekends.  That sounded like a good thing in the grand scheme of it all.  But wait, here comes the REALLY good part.  I predict you will say to yourself, “WHAT?!”  Then, I will say I told you so in just a little bit.  Go on, keep reading.

I left MD Anderson with my parents feeling good despite the news I’d just received because I felt like all my questions and concerns had been addressed.  I knew what to expect.  I left in anticipation on my way to a local Houston television news station for an interview.  I’d been contacted by them a couple of weeks before my visit that they’d picked up my story and wanted to help me in my new passion of promoting awareness among Hispanics about the importance of registering on the national bone marrow registry.  They were excited and so was I.

I arrived at the station and as I sat in my car powdering my nose and touching up my non-existent eyebrows, my cell phone rang.  Here comes monkey wrench #3.  I should have known something was up when I saw it was from MD Anderson.  I didn’t think anything of it as they were supposed to call me that afternoon about my future radiation appointments.  Wrong.  It was Dr. L’s physician’s assistant.  “Cristina?”  (Because I’m now on a first name basis with everyone at MDA.)  “Yeah bud, what’s up?” I asked.  “Um, are you still here at MDA?”  This was getting weird fast.  “No, I’m at a news station for an interview.  Why?” I replied.  “We looked at your CT again from yesterday,” UH OH, “and we found a blood clot in your lung.”  Say what?!  I told you so.  Wait it gets better.  “How long do you think you’ll be at your interview because we need you to come back to MDA for medication.  Do you know how to self-inject?”  WHAT?!  Heck no, I don’t know how to self-inject!  He proceeded to tell me that I would have to self-inject a blood thinner every day for the next SIX months.  I could not believe my ears.  My mouth dropped open and a fly could have made his home in there without me noticing.

“Wait a minute.  Friend, did you just say SIX months?  You’re joking right?” I pleaded.  “I’m sorry but yes it’s for six months,” he replied.  Here I was nervous already for my impending interview in the next 30 minutes and another bomb had been dropped right on my head.  I didn’t have time to process it.  I had to gather my thoughts and get my head together for this interview.  I had to put on my big girl pants.  The bone marrow registry needed my attention more at that moment than my own health problems.  I think God planned it perfectly this way.  It made me see that there is always something bigger and more important than myself.  I had to be the best that I could be in that moment and be able to articulate the message I so needed Houston’s Hispanic community to hear.

I walked into the news studio, took my hat off, and proceeded to do the interview cue-ball bald.  I felt liberated and the words flowed as if God was right there in my ear, whispering them to me.  Before I knew it, it was over and I quickly said my thank-you’s and goodbye’s.  I had to get back to my own reality, after all.  With my medication in hand, Tuesday was finally over.  Little did I know what Wednesday would bring.

Wednesday.  Today.  Today had another monkey wrench in store for me.  What number were we on?  Oh yeah, number 4.  I had an appointment today with my stem cell transplant doctor, Dr. S (S for stem cell, you got it).  At this point, we all knew my sister was not a match but here comes the clincher:  Dr. S said that they had done a search on the national bone marrow registry but no match was found for me.  Wow, another punch in the stomach.  He explained that my genetic make-up is very ‘unique’ and it’s going to be difficult to find a match.  I mean, I always knew I was weird but now it was being genetically confirmed.  Dr. S turned to my parents and informed them that if a match was not found by the time I needed it, we would have to settle for a half-match, i.e. one of my parents.  If it turns out this way, one of my parents will have to give me bone marrow instead of stem cells–a more involved process.

By the time we all knew it, we’d been sent down to the lab for both of my parents to have their blood drawn for HLA typing.  Results won’t come in for at least another seven business days so we’re bracing ourselves for a long week.

Three days was all it took.  Three days for a total game-changer but I’m putting on my game-face.  Game on.

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For more information on becoming a bone marrow or stem cell donor, visit www.bethematch.org.  Be a hero.  Save a life.  Be the match.

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Chemo Session #10: Are You the One?

Its 6am and I’m in my hospital bed but I can’t sleep.  The hospital never sleeps.  There’s a constant stream of shoes squeaking up and down the hall, nurses coming in at all hours of the night to check my vitals and change out my IV bags of chemotherapy.  They’re just doing their job but it’s messing with my beauty sleep.  The steroids they give me are messing with my body and my sanity.  They make me so jittery like I just drank 10 cans of Red Bull and so my mind begins to race with all sorts of nonsense.  Some of it is silly like I was contemplating asking for another blanket on the intercom in a British accent. Should I use a cockney accent or something more regal like the Queen of England?  Or maybe something like Merry or Pip from Lord of the Rings?  I watched it before I came to the hospital so that explains that.

Anyway, there’s also more important things my mind begins to run away with.  I can’t stop thinking about this chemo session.  It’s the 10th cycle and the most aggressive one I’ve received to date called R-HyperCVAD.  Woof!  It sounds like a part for Artoo-Deetoo.  That’s the little robot from Star Wars and now I’ve made references to not one but two ultra geeky movies so now you know I’m a full-on geek.  I’m going to get on with what I’m trying to say now.

Preparing for the worst but hoping for the best.

You’ve heard that expression before, right?  That’s me right now.  Preparing for the worst but placing hope against hope for the best.  You see, doctors are vouching that this session will finally put me into remission which will then allow me to receive my life-saving stem cell transplant at MD Anderson.  If I’m not in remission after this, then I don’t get my transplant and God only knows what these doctors have planned for me next.  I hate to think about it but its an inevitable possibility staring me right in the face like a snarling, salivating pit bull.  I have to clarify something. Just because I’m preparing for the worst doesn’t mean I don’t have faith and hope in God that I’ll be in remission.  It only means I’ve learned that I don’t know what God has planned for me.  Too many times in this journey have I not prepared for the worst and the worst happened. That can’t be good for anyone’s sanity.

Still, I hope and pray with urgency to God that this be my ticket to the Promised Land of MD Anderson where it floweth with stem cell transplants and world-class doctors.  I plead with Him day in and day out that this be one of my final hurdles in this never-ending nightmare they call non-Hodgkins lymphoma.  And so I ask:  Chemo #10, are you the One?  Are you gonna be the one to grant me the news I’ve been waiting for?  Will I hear the ever-beautiful word ‘remission’ soon?  So many questions but I try to pace myself.  I try to remind myself that this is not about me.  There is a plan for my life and what it is, I still do not know.  My goal right now is just to take all this one day at a time.  Like that old PSA said, “The mind is a terrible thing to waste,” and I don’t plan on wasting it on the could have’s and would have’s of life.  That’s for chumps.

Instead, like I said, I shall look forward and prepare for the worst but hope for the best.  There’s a hurricane a’blowin’ in the gulf of my life and I’m sure as heck gonna board up my house. Hopefully, it’ll pass by my house unscathed.

Hurricane Cancer

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Now it IS me.

Defeat.  I thought I knew what defeat felt like before but I had no idea.  Not even close.  When the doctor said that he would be unable to proceed with the stem cell transplant, it felt like I had been broken into a million little pieces all over the floor.  So many pieces that they would never all be found and there’d always be pieces of me missing.  I felt like Humpty Dumpty and I’d never be put back together again.  The stormy, thrashing weather on the drive home from Houston after this news mirrored my insides:  a torment of tears and lightning pangs of hurt and anger.  An inescapable flood of defeat.

I’d initially left my hometown for Houston in a sea of tears as well.  Crying because I would be homesick for two months but also crying because I was headed for salvation.  Or so I thought.  Houston was my promised land.  It promised just one more round of hideous chemo and my lifeline:  my stem cell transplant.  Two more months until I would be able to join the elite circle of cancer survivors and enjoy the rest of my life cancer-free.  I was ready to cross my desert and enter Canaan.

But in true Moses fashion, it was not to be.  At least this time around it wouldn’t be.  Victory had slipped through my fingers the way sand does when you clutch it too hard in your hand.  The harder I had tried to hold onto it, the faster it had slipped away.  I felt like a failure.  I’d failed God, I’d failed my family and friends, and I’d failed myself.  I hadn’t tried hard enough and now I was sent back home with my tail between my legs.

My PET/CT scans had shown that although the mass in my left hip had disappeared, the mass in my chest had done the opposite: it had grown.  Despite high-dose chemo and my efforts to remain positive, the stupid thing had grown.  What the heck??  I was supposed to be in remission and ready for one more round of chemo before my transplant and now I had to go back home empty-handed with nothing to show for it?  How was I supposed to face everyone?  I’d said my goodbyes, said my ‘I love you’s’, and left everyone with hope and expectancy.  How was I supposed to explain why I was back and starting again from square one?  This was so unfair.

Now I’m back home and its been a couple of days since this news.  I’ve been in hiding and refuse to answer my phone or see very many people.  I don’t like to see pity in anyone’s eyes for me or have to explain a hundred times over why I’m back home and not in Houston.  Its selfish, I know, but I have to do it or I will go clinically insane.  My sanity at this point requires selfishness.  I’m now waiting for a panel at MD Anderson to review my ‘aggressive’ case this coming week and make a recommendation as to what type of treatment should be next before trying again for the stem cell transplant.  In the meantime, a blood-typing kit has been sent to my only sibling, my little sister, to see if she is my perfect match.  A week will tell us whether she is or not.  The search for my perfect match has begun.

Oh, the irony.  To think that I’ve been campaigning for people to sign up for the bone marrow registry saying that it could have been me that needed a donor when all the while, unbeknownst to me or anyone else, it WAS me.  Now it IS me.  It feels like a sick joke.  Note to el diablo:  it is NOT funny.

I’m due back at MD Anderson in about six weeks to re-scan me to see if this upcoming chemo has finally done its job.  In a perfect world, my sister is my perfect match, I will be in remission in six weeks, and I’ll be able to get my transplant.  But I do not live in a perfect world and although I am optimistic (I really am), I’m also a realist.  I’m a realist in that nothing ever happens the way WE want it to, it happens the way God wants it to and His way is never easy.

Although this is one of those major setbacks, I know I have to keep on and keep trying.  Life is all one big struggle anyway but its also beautiful, no matter what.  Every day that I get to breathe is a gift and I am grateful still.  Today my struggle is with cancer, who knows what struggles tomorrow will bring?  Everyone has their own desert to cross at one point in their lives and this one is mine.  My time is now.  Now it IS me.

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Transplant 101

INTRO TO STEM TRANSPLANT

“Intro to Stem Transplant.”  That was the name of the class I took a couple of weeks ago at MD Anderson.  I didn’t get any college credit nor was there a test at the end to show that I passed the course.  I didn’t even have to take it, it was totally optional.  This optional hour and a half class ended up making me think the hardest about anything since I started my battle against non-Hodgkins lymphoma.  It made me ask myself, “Why them and not me?”  I know that sounds weird being that I’m going through this cancer battle and that maybe the question should be inverted, i.e. “why me and not them?”  Let me explain.

You see, this class was simply about information.  Information for stem cell transplant candidates and their caregivers about what to expect and how to prepare the best way possible for the inescapable leave of absence from our homes.  Information about what exactly is a stem cell transplant, types of transplants, health risks, and the list goes on and on.  I was alone in this class and that fact was not lost on me.  Everyone else had someone: a spouse, sibling, son, daughter, caregiver.  It was nobody’s fault I was alone as my father was waiting in the lobby since English is not his forte.  My husband was stuck back home working for the medical insurance I still so desperately need.  In hindsight, I think it was better that I was alone.  It allowed me to really listen to the plight of the people around me.  Yes, my plight is dire but, believe it or not, some of my peers that day in that very room have it much worse.

AUTOLOGOUS VS. ALLOGENEIC

I’ve been asked time and again since I first let people know about my upcoming stem cell transplant if they could somehow be a donor and told that if i needed their bone marrow, they would gladly give it.  I feel so lucky to have people around me that are so giving that they would literally give a part of themselves just for me.  Truly humbling stuff.  I’ll tell you why else I feel so lucky.  For reasons still unbeknownst to me, I don’t need a donor.  That’s right.  The stem cells I’ll be receiving will be from my own blood.  The transplant I’ll be having is an autologous transplant. In short, I’ll get hooked up to an apheresis machine (which resembles a dialysis machine) that will filter the stem cells from my blood and then they’ll freeze those stem cells.  After a high-dose chemo session to stop bone marrow production, those cells will then be placed back into my blood stream with the hope that they will find their way back to the bone marrow and start to reproduce normally.  Its all relatively painless except for that pesky little thing called chemotherapy, or rat poison as I like to call it.

Apheresis: Stem Cell Transplant

There were several people that day in my class that aren’t so lucky.  They need an allogeneic transplant which, you guessed it, requires a donor.  I used to think stem cell transplants were solely for leukemia patients, but I’ve since learned otherwise.  Its also used to treat other cancers such as lymphoma, myeloma, and breast cancer and other non-cancer diseases such as sickle cell anemia, aplastic anemia, various immune-defficiency diseases, and the list goes on.  That day in class, there was a diverse group of us with lymphoma, myeloma, and leukemia.  The instructor asked us to raise our hands if we were having an auto transplant.  Only about half of us raised our hands.  The rest were set to have a donor transplant.  HALF THE CLASS.  That was the moment I found myself asking the question:  “Why them and not me?”

It then became apparent as the class wore on that the chances of finding a donor in the National Bone Marrow Registry or Be The Match, are bleak.  Just as only half my class raised their hand, statistically only half of that remaining half will find a donor.  A quarter of my peers that day in that class won’t find a donor.  According to Be The Match, 10,000 patients worldwide need a bone marrow transplant but only half will receive one.  I almost lost it in class as this horrible truth reared its ugly head right in my face.  I couldn’t imagine the stress that I’d already been experiencing only to be made worse by hoping for a donor, hoping to find that one perfect match that could save my life.  Unimagineable.

THE CHALLENGE.

I left that day with mixed feelings.  Relief at the fact that I don’t need a donor.  Sorrow for those that do.  Anger at the fact that half of them won’t find their perfect match.  Most of all, I felt propelled.  I HAD to do something, even in my own small way.  I went online straightaway to find more information on this whole stem cell donor business.  After perusing the many pages of Be The Match, it was clear.  If people were asking me if I needed a donor, why not have them make good on that and become a donor on the national registry?  Why not try to get more people added onto that list?  Why not?

I knew who I had to ask first.  As soon as I got back into town, I sat my husband down.  I told him about the people I’d met and how lucky we were that I didn’t need a donor.  I didn’t have to ask and he didn’t hesitate.  He immediately asked what he needed to do to be put on the national donor registry.  Needless to say, I was overjoyed!  Be it whether he gets a match or not one day, its enough to know that he is willing to save a stranger’s life.  He put it best in this way, “If it were you, I’d want someone to save your life.”

After this conversation, I knew more could be done.  If my husband would do it in my honor, how many others would do it too?  After all, I could have VERY easily fallen into this category of needing a donor transplant.  That could have been me.  And I’ll take it a step further, make it a little more uncomfortable in here.  You reading this now, yes you my loyal reader, it could be you.  Your spouse, your child, your parent, your best friend, your neighbor, or (ahem) your favorite Zumba instructor.  Cancer knows no bounds and has no respect for those we hold dearest.  By the way, if you’re a minority such as Hispanic, African-American, Asian, Indian, or Islander, your chances of finding a match have just been cut down again.  This Mexican-American right here would be up a creek right about now.  There aren’t enough registry members of diverse racial and ethnic heritage so adding more diverse members increases the likelihood that all patients will find a life-saving match.

So here it is, the challenge:  I challenge you (yes, you!) to save a life.  Get your name added to the national bone marrow registry today, don’t wait.  Save a life in your lifetime.  Why not?  What do you have to lose besides a few replenishable cells?

Yeah I did it.  I busted out the sad puppy, Sarah McLachlan-esque sob-inducing video to further my cause.  So sue me.  But then get your name on the bone marrow registry.  Visit Be The Match and see just how simple the process really is.

P.S.

I’ll be posting pictures soon of my adorable husband with his self-kit from Be The Match to prove just how easy it is.  Cheek (face…just clarifying) + cotton swab = nationally registered donor.  It really is that simple!

P.S.S.

I want to see your pictures too.  Hey I need proof!!

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My Secret Fear

Two weeks ago, I had a dream that an old family friend and his wife from Costa Rica, now living in Missouri, came all the way to Corpus Christi to pay me a surprise visit.  The dream was so vivid and  I awoke with tears running down my face from the joy Willy and Zully brought me by their visit.  I was young when they moved away and I haven’t seen them for years.  They’re very special to my family and I but that wasn’t the reason their visit made me so happy in my dream.  You see, a few years after they moved away, Willy himself had battled lymphoma (mantle cell), was close to death, and WON.  He’d come to visit me in my dream to reassure me that I’d be ok and to be strong.  After waking up, I figured I’d had this dream because I’d spoken to him and his wife on the phone a couple of days before and I very much value their spiritual advice.  During that phone conversation, Willy gave me this bible verse in Chapter 1 of Joshua which had given him much solace during his battle:

9 Mira que te mando que te esfuerces y seas valiente; no temas ni desmayes porque Jehová tu Dios estará contigo en dondequiera que vayas.

9 Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the LORD your God will be with you wherever you go.

He didn’t know it, but that was one of the verses my mother had always repeated to me in Spanish growing up.  I love that verse.  That conversation with them had really gotten to me since Willy knew exactly what I’m going through and Zully knew what our marriage was going through.  After my parents, Willy and Zully are the most faithful and spiritually-connected people to God that I know.

I’m about to Quentin Tarantino this story.  I started from the middle and now I’m gonna rewind to the beginning.

I’m about to reveal the fear I’ve been keeping a secret since I first received my diagnosis.  I’d been harboring this fear for almost nine months.  You could even say I was incubating it which is very ironic considering the fear.  It had grabbed a hold of me and started growing like a weed; ugly and unwanted, and hard to get rid of.  I’d kept this fear a secret from everyone, including my husband.  I think I didn’t even want to admit it for fear of it coming true.  Praying about it was done in silence, in my head.  When my doctor in Houston reiterated to me that infertility after the high-dose chemo I was now facing was a very possible outcome, I became numb.  I’d almost started to accept the fact that I would not be able to conceive.  Almost.

Fast forward to two days ago, my parents informed me that Willy and Zully were driving to Corpus to visit me and spend Spring Break here in town.  I’d already told my parents and my husband about my dream.  I didn’t bother to ask my parents if they’d told Willy and Zully about my dream but I figured they had and that’s why they had decided to pay me a visit.  In the meantime, my baby fever was growing by the day and so was my pain at the thought of possibly not being able to bear one.  The Sunday morning of Willy and Zully’s impending arrival was baby dedication day at my church.  Instead of baptizing our babies as in the Catholic church, we Protestants dedicate our children’s lives to the Lord and promise to raise them according to His word.

My cousin decided to dedicate her 3-month-old baby boy that morning and brought him dressed up in the cutest tuxedo suit with tails.  Dressed to impress.  I watched from the stage at my usual spot among the band as our pastor began to pray for him.  Baby B smiled at him in a way I’ve never seen a baby that young smile at anybody.  His gaze was fixated on Pastor Mike as if he knew what was happening and royally approved of it.  My heart melted.  A couple of hours later, we went out to lunch to celebrate as a family and Baby B was being passed around among all the women, doted on and hugged and kissed.  It was soon my turn and although I was ecstatic to have this baby in my arms, it was bittersweet.  He smiled at me with his double-dimples and I made him laugh when I nuzzled his little face over and over.  As he cooed, I kept thinking, “I hope I can have one of you someday.”

Willy and Zully arrived at my house later that night with my parents along with their four teenage kids, only one of which I knew since they’d moved so long ago.  After the standard hugs, how are you’s, and how have you been’s, we settled into our small living room.  Zully began to tell us how she and Willy had been led by God to come see me and pray for me and they were merely being obedient to His will.  They said that they felt an innate need to do this and that they made the decision to come about two weeks ago after our phone conversation.  “Oh wow,” I said.  “So my parents told you about my dream?”  They looked at me like I was crazy and I looked at my parents, “You didn’t tell them?”  My parents shook their heads no, “We haven’t spoken to them about anything; your aunt is the one who told us they were coming.”  After my initial surprise, I proceeded to tell Willy and Zully how they’d visited me by surprise in my dream.

“That’s confirmation from God that we were supposed to come here,” Zully said.  Of course, I was floored.  I think we all were.  But God does things BIG and He wasn’t done with the surprises.  There was still that pesky secret fear I’d been dealing with and I had no idea I was about to be discovered.  After giving me the words of wisdom and support I needed to hear and relate to, they asked to pray for my husband and I.  Willy, Zully, their kids, and my parents encircled us and Willy began to pray aloud.  Instead of praying for the usual like healing and strength, he began to prophesize that we would hear the laughter of children filling our home, not one child but ‘children’.  He said that God wanted me to know that I would be a mother and for me not to be afraid.  I was a broken heap at the sound of those words.  I had not uttered a word of my fear to anybody, not even to God but He’d heard me anyway.

I was relieved, elated, and completely surprised of course.  There it was.  That was the surprise God had shown me in my dream.  It wasn’t the visit that was going to be the surprise; it was the message He had sent them to give me that was the surprise.  I’ve never once feared for my life since this ordeal began.  I feared the process of getting to that point.  I feared not being able to experience a baby in my womb and giving birth to the miracle that is new life.  Now that the Lord was so merciful to tell me that the desire of my heart will come to fruition, the process doesn’t matter anymore.  Chemo, needles, nausea, hair loss, stem cell transplant:  its a small price to pay for the love of a child and I’ll do whatever it takes to get there.

When he was done praying, I confessed through sobs that I’d been keeping this fear a secret, telling not a soul, tucked away deep inside my heart.  I told them that I hadn’t even expressed it to my husband whom I tell everything, even things we call TMI (too much information).  Willy said he knew in his heart that that was what was instilling fear in me.  I didn’t need to be afraid anymore.  Us women tend to keep such things to ourselves sometimes in order to not upset our loved ones or “worry” them if we feel it unnecessary.  We feel it’s our cross to bear and no one else’s all in an effort to save the people we love most from any grief.

Its no accident that Willy battled lymphoma before me and went through the same treatment I’m facing now.  Its no accident that the people I regard so highly were precisely the ones to bring me the message God needed me to hear.  To think that the Maker of the universe and the stars took the time to orchestrate all of this just for me, a mere speck in His universe, simply mystifies me.  But I don’t need to understand it.  Most of all, it lets me know just how much He loves me and that all this is to serve a greater purpose I’ve yet to see or understand.  I am no longer afraid of what’s to come because I know who’s in charge and I’m so glad its not me.  The Maker of the universe has got this.

Willy & Zully

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Super-jaded

So, I met my new doctor today at M.D. Anderson in Houston.  Talk about a know-it-all but that’s a compliment, believe it or not.  Even so, I have no more answers today than I did yesterday.  All I got today were new worries to add to the mix.  You see, my current oncologist had already broken the news to me on Feb. 8 that  he believed I relapsed after my last PET scan showed suspicious activity in the now shrunken tumors.  He explained to me as I cried that I would undergo more intense chemotherapy and a stem cell transplant at M.D. Anderson for at least two months.  My husband and I had gone in not totally optimistic to that appointment in an ill-fated attempt at protecting our hearts.  That little ray of hope we’d been hanging on to broke our hearts all over again.  We cried and moped and felt sorry for ourselves for a couple days.

But, we got it out of our systems and instead started asking what’s next on the agenda for cancer-fighting.  Consequently, today as my new doctor at MDA explained the possible side effects of my upcoming treatment such as infertility, organ damage, and poor quality of life thereafter, I did not cry.  I didn’t flinch and I didn’t tear up.  I probably forgot to blink too.  Why?  Am I becoming jaded?  The definition of jaded according to Google is this:

Tired, bored, or lacking enthusiasm, typically after having had too much of something.

Tired?  Yes.  Bored?  Yup.  Lacking enthusiasm?  Double-yes (pun intended)!  Have I had way too much of this something?  A resounding YES!  I think I might even be SUPER-jaded.  Or is something else happening?  As the doctor went on about my doomed eggs, all I remember thinking was, “Its ok.  Don’t worry about that right now.  Just do what you need to do.”  Or could I have heard that?  It kept popping into my head as my smarty-pants doctor counted off all the ways I was gonna get “jacked up” as a good friend of mine calls it.  It seemed like I was shrugging these things off in a jaded manner because even my doctor asked me if I was really ok.  I’m definitely scared as hell and I should have been quaking in my awesome studded boots but my composure today was inexplicable.  Inexplicable in lowly human terms at least.  I’m not Super-Jaded the superhero.  I wish I were this super strong woman that everyone makes me out to be but, alas, I am not.  I’m just this chick with cancer that asks Jesus to help her everyday.  He totally whispered that in my ear today.  Nothing more, nothing less.  Only what I needed.

At this point, I’m all cried out and I’m jaded in the way that I just wanna get my fight on and get it over with.  Doc didn’t give me any kind of assurance today but that’s just what I needed:  some good, old-fashioned honesty.  Give it to me straight.  Don’t promise me the moon and then just show me your butt.  This is a huge Goliath of a giant I’m facing and he’s not to be taken lightly.  Yes, NOTHING is impossible for God but where’s the honor and glory for Him in defeating a midget?  I wanna GRRR when I’m told by some that “ohh you’re gonna be juuuuuust fine, no worries!”  like its the common cold.  This is not something to be written off or taken lightly.  Cancer is a formidable opponent that claims lives every day and a cancer survivor is a living, breathing testament to the healing power of God.  I respect cancer but I’m still gonna murder it.  It will happen in His time, not mine.  Hey cancer:  I have a tombstone with your name on it, not mine.

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