Monthly Archives: August 2012

Left and Right

What is going on?!  I feel like I’m being attacked left and right and I am.  Literally.  There is something dark at work here and it’s getting worse by the day.  It’s a physical, emotional, and spiritual on-going battle and I’m surrounded.  I’m cornered and I have nowhere to run.  Nothing to do but stand my ground where I am.  That’s all I have left:  my stand and my faith that someone bigger is still watching over me no matter what.

I’ll explain why I feel like this and you’ll understand.  As of last week, the latest news was that I’d need to undergo several rounds of radiation for the tumor in my chest and that doctors had located a blood clot in my left lung.  Remember, my left lung.  This is significant considering the news that I received just two days ago.  After the initial blood clot diagnosis, I was given an appointment to see another doctor on Tuesday, a cardiopulmonary specialist.  That’s right:  Dr. C.  Make him number 4 on my highly specialized team of experts.  I was expecting to see him about said blood clot but I was sorely mistaken.  He came in, sat down, and asked me if I knew why I was there.  I asked him, “Is it about the blood clot?”  He smiled and said, “Well, yes that’s part of it but there’s something else going on and I need to show you.”

Oh God.  My heart started beating so hard and fast I thought he could hear it.

Dr. C turned on the computer in the room and brought up two of my CT chest scans:  the one from April and the most recent one I’d had on August 13, last week.  He showed me April’s scan first to give me an idea of what ‘normal’ lungs look like.  I thought to myself, ‘Normal??  What’s wrong with them now??’

This is an x-ray of a set of normal lungs.  These are not my lungs but it’s the best representation I could find on Google.  The dark parts indicate air so those are the lungs and the lines at the bottom drawn in are the diaphragm.

Normal set of lungs

Now, a short medical lesson:  the diaphragm is the skeletal muscle that separates your chest from your intestines and contracts up and down to allow the lungs to take in and expel air.  Although not a very often thought of part of the body, it is a very important one.  If your diaphragm isn’t working, you ain’t breathing.  This brings me to the most important part of that conversation.

Dr. C then brought up the August scan and what I saw was frightening.  You don’t have to be a cardiopulmonary doctor to see the difference.  My right lung looked like this:

Paralyzed diaphragm

Again, this is not the actual x-ray of my chest but it might as well be.  Isn’t that gnarly?  “Why is my right lung way up there?!” I asked him.

Diagnosis:  diaphragmatic paralysis.  The tumor in my chest is squeezing the nerve that controls the right side of the diaphragm causing it to become paralyzed.  My right lung is no longer contracting as it needs to so it’s only working at 60% capacity.

Bells started going off in my head and a lot of questions were automatically being answered in there too.  The time after chemo when I was panting like a dog in my bedroom and all the times since then.  Being out of breath walking across the house.  Gasping for air at band practice when I tried to sing.  This whole time I’d blamed the chemo for making me tired, therefore, out of breath.  In reality, it was the tumor that had been causing all my problems.

Dr. C asked me if I’d been feeling out of breath and I told him everything.  He nodded in agreement of the symptoms I was naming off for him, one by one.  According to my symptoms and since my April scan was normal, it’s been since June more or less that my diaphragm became uncooperative.

So what does all this mean?  We don’t know yet.  Dr. C says that even if the radiation works to shrink the tumor, the nerve only has a 50/50 chance of returning to normal.  He said we’ll have to wait and see, but in the meantime I have to condition my lungs and body with moderate exercise to work with 60% capacity just in case it stays this way.  Although Dr. C says this is do-able, that I can live with 60%, it’s still gonna be a huge challenge.

The things I love to do the most right now are most in jeopardy.  I thought about dancing, my number two love.  I dance like nobody is watching when everyone is watching.  I sweat like a pig until I’m out of breath just to keep going.  A 60% working lung doesn’t lend itself to that.  How is my husband gonna spin me around on the dance floor without me looking like my eyeballs are gonna pop out from losing oxygen?  Not a pretty picture.

And my number one love?  Singing.  It hasn’t been impossible to sing, but it’s definitely been a challenge lately.  And that scares the living crap out of me.  I haven’t been able to dance in over a year because of my bum hip anyway and I can deal with that.  Not being able to sing?  I can’t deal with that.  It’s been the only thing that I can still do through all this; the only thing cancer has not taken from me.

Even though it’s being challenged, I am determined to not let this tumor take away the one thing I can still do well, the one thing I have left:  my voice.

You might think it’s dumb, but Rachel Berry from ‘Glee’ read the script right off of my heart when she said,

Before you close the door, I need you to hear me sing.  I have to.  There’s nothing I’m as good at or as passionate about or that brings me that much joy.

Through this whole journey I’ve repeated to my husband time and again, “As long as I still have my voice and I can sing, I don’t care if I can’t dance.”  Ironically, now that statement is being challenged.  The ability to still be able to sing despite my situation means everything to me.  It means I’m still me in spite of it all.  So help me God, I intend to keep it that way.

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.

———————————–

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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