Tag Archives: lymphoma

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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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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I heart MD Anderson.

For the past two weeks, I’ve been traveling back and forth three and a half hours each way to Houston.  MD Anderson has been my destination and in that short time, has literally become like my second home which is the biggest surprise for me.

When my oncologist told me he was referring me to MD Anderson, he might as well have said he was sending me to Auschwitz for all I cared.  I thought to myself, “MD Anderson?!  That place is all cancery and sad!”  I knew for sure it was going to be depressing, smelling like a hospital, and white-washed walls and floors from top to bottom.  There would be mean nurses with squeaky white shoes and way too many sad patients with bald heads and sunken faces.  I knew this for sure.  It was definitely gonna be horrible.

My first contact with anybody from MD Anderson was by phone.  She called me to schedule my first appointment with my new specialist.  To my surprise she was super sweet and super helpful.  She was the one to break the news to me that I’d be spending at least a week or more in Houston for my initial evaluation.  “WHAT?!,” I exclaimed.  “Are you serious?  Why?!,” I asked her.  Turns out, I’d be going through a variety of lovely medical tests so my new doctor could make a more informed decision on how to proceed with the best treatment and the results would take at least that long to come back.  They basically needed me at their beckon call so I needed to stay in Houston.  Fast forward two weeks later and I’m still not done with tests but at least they prepared me for the wait.

I received an email shortly after that call with all the information I would need to get to MD Anderson and my medical record number which I have found out since is basically your second name at the center.  They always ask me to verify it and I can never remember it.  Go figure.  I then received a call from a nice young woman from Patient Services to let me know she’d be the first person I’d be meeting face to face when I arrived at the center.  Upon arriving at MD Anderson with no problems because of the excellent driving directions, the valet greeted us with a smiling face and happy attitude.  To my father’s pleasant surprise, they all spoke Spanish.  As I stepped foot for the first time into MD Anderson, I instantly noted the feel and the atmosphere in the lobby.

There was a cheerful lady directing everyone to the right elevator and floor and she immediately came to my aid after seeing the big question mark I so obviously was wearing on my face.  She asked me what area I was looking for and she knew without hesitation where to direct me.  The lobby smelled of fresh gourmet coffee from the cute, little cafe and smelled nothing like a hospital.  It smelled of mouth-watering food and I later found out it was the Starbucks and Chik-Fil-A located right down the hallway.  There was not a white wall or floor in sight.  Instead calming shades of blue and aqua colored the walls, lush plants adorned the lobby, and there were sofas everywhere dotted with cushy, inviting chairs.  There were huge, beautiful aquariums filled with silly tropical fish entertaining the children.  Most of all, I noticed the people, the patients sitting and walking around.  These people were LAUGHING.  Smiling faces, no frowns, nobody sad.  Sure, lots of them were bald as I expected, but they wore their baldness loud and proud; a symbol of their fight and determination.  Letting their freak flags fly, so to speak.  Right on.  I instantly felt a unique sense of belonging and comfort I hadn’t felt since I started this battle.  Suddenly being among so many people who knew what cancer “feels” like made me feel proud to be a part of this club.

I took my designated elevator up to the sixth floor: next stop, the Lymphoma/Myeloma Center.  More aquariums, cushy chairs, and smiling people.  I made my way to the reception desk to check in and I heard him first.  I heard a man loudly singing a jolly little tune and I think my mouth dropped when I saw him.  I hope it didn’t but I think it did.  My mouth dropped because this bald, older man sitting in a wheelchair, with the frailest frame I’d ever seen was SINGING.  His skin was a sickly shade of green and he had a few lone white hairs sporadically sticking out of his head here and there yet his giddy attitude and presence put a huge smile on my face.  I smiled one of those stupid, mouth-open, toothy smiles that you smile when you see a cute baby or something.  He was patiently waiting for his turn in the line to speak to the receptionist and had no idea what an impression he’d just made on me.  I realized this was the place I’d been looking for and I’d finally arrived.

They didn’t take half as long to call me back as I’d expected and my dad barely had a chance to try his hand at one of the many half-started puzzles on the coffee tables.  My doctor’s nurse was not mean and did not have squeaky, white shoes.  She was a breath of fresh air with a warm smile and a very infectious laugh.  It was apparent that she genuinely loves her job and was happy to be there.  My doctor’s assistant was the next person to meet and he was equally as pleasant.  He asked me all kinds of questions and took notes furiously like he was studying for his final exam.  Everyone from the receptionist, to the nurse and the physician’s assistant repeated to me how amazingly talented my doctor is.  I took comfort in the fact that, apparently, my doctor is not only the head of the lymphoma department but he’s the head of the lymphoma department of the best cancer treatment center in the world and that makes him a pretty big deal.  I had the best oncologist in my hometown and now I had the best lymphoma doctor in the world.  God had provided me with only His best.  My doctor turned out to be just as intelligent as they’d all made him out to be.  He was genuinely concerned with my well-being and spoke to me with all the honesty and clarity I so desperately needed to hear.  The biggest plus was he also spoke fluent Spanish and was able to answer all of my father’s questions with ease.  This was huge for me since its hard enough for me to understand what’s happening let alone translate all the medical jargon for my parents to understand.  Amazing.

I left that day with a completely new outlook on MD Anderson.  Not only had I been completely wrong about what it would be like, I found myself liking being there.  I was actually looking forward to the next time I’d get to visit.  I was looking forward to being among “my people.”  Looking forward to having Starbucks and Chik-Fil-A at my disposal.  Looking forward to the beautiful outdoor patios and gardens on every floor that need exploring.  This was definitely a very far cry from Auschwitz.  Its turned out to be my safe haven away from home.

Did I mention the free, high-speed wi-fi great for blogging on the go?!  I heart MD Anderson.

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Completely Oblivious.

Completely Oblivious – Jan. 2011

Yup.  That’s me.  Completely oblivious to what’s lurking in my body, coming to get me.  I’ve always been a relatively healthy person.  My sister and I have had an ongoing joke for as long as I can remember about how she got the short end of the stick in the health department.  She’s had to get braces, a Dark Ages-looking metal contraption to fix her overbite, asthma, a cancer scare, and the list goes on.  Not me.  I’ve enjoyed a lifetime of straight teeth and no chronic health issues.  I think I can even count on one hand how many times I’ve been sick with the flu.

And so, at the time this picture was taken, life was peachy keen and couldn’t have been more perfect.  My husband and I had just jumped into our first adventure in starting our own business, a Zumba Fitness studio in October of 2010.  If you’ve been living under a rock or in a cave, in short, Zumba Fitness is a Latin-inspired dance workout.  Fun and effective.  I’d lost 50 lbs. at this point with the program and was thoroughly enjoying teaching 10+ classes a week.  Not to mention the wonderful man I get to call my husband who made this dream of mine come true.  This was my full-time job and I loved it.  Lucky girl.
Lymphoma was about to rear its ugly head and turn our perfect life together upside-down.  I’ve always liked those crazy rides at the carnival or theme parks that turn you upside-down, the loop-de-loop.  The ones where people look at you like you’ve lost it when you say you wanna do that again.  This is THE ride of a lifetime but I don’t think I want a second go-around.  Call me crazy.
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Its lymphoma…with an ‘L’.

Wow. So this getting to know myself thing is really interesting; not to mention scary. At least to me it is. And this whole blogging thing is REALLY new to me but, I have to admit, painfully necessary.

I was diagnosed with non-Hodgkins lymphoma this year on June 28. Yeah, the big “C” as they call it. Or the “aww, that sucks for him/her” as I used to call it. I told an English-challenged friend of mine what was wrong and he asked, “Isn’t that when you’re like addicted to sex?” How I wished it was just that. “It’s lymphoma with an ‘L’, not an ‘N’,” I replied. Hence, lymphomaniac.

I started this blog for a few reasons:

  1. It’s cathartic.
  2. I have chemo brain and I need to write this all down before I forget.
  3. I facebook WAY too much. Is ‘facebook’ or ‘to facebook’ a verb?
  4. You (meaning my adoring blog readers) oughtta know. Yeah, I know… I heard Alanis too.

So, here goes nothin’. Stupid cancer. That’s “Stupid.” With a capital ‘S.’

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