Tag Archives: radiation

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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My Love/Hate Relationship with Radiation

A haiku about radiation therapy:

Rock in my shoe

My Obi-Wan Kenobi

Radiation

Ok, so I’m not a poet but that’s pretty much how I feel about radiation right now.  It’s a strange thing, this radiation.  Today marked the 12th round out of 23 total rounds and I don’t know whether to love it or hate it.  I’m not gonna lie.  We had a rocky start, radiation and I.  Our relationship is not great but it looks like we had a breakthrough today.  Things are looking up for us.

My first encounter with radiation was definitely NOT love at first sight.  First impressions are everything and the first impression I got was a resounding (and I am not exaggerating):  HELL TO THE NO!  I literally came out of that first session in sobbing tears with my poor dad beside me in the car looking at me like he was a deer caught in headlights.  My first appointment was only supposed to last about an hour with subsequent sessions to be half an hour long.  I was fine until that first hour turned into two and then I was anything BUT fine.

Let me make this clear before I explain what happened:  I am not claustrophobic in the least.  In fact, I kind of like enclosed spaces.  They make me feel safe like a baby rolled up in a burrito blanket.  But that first day, I got a taste of what claustrophobia feels like for the rest of the world.

Each treatment usually goes the same way every time.  I have a special mask that was made to fit my face and head exactly for each treatment.  This mask is made of plastic and has a honeycomb design that allows for me to breath, blink, and not much else.  I lay down and they begin to mark my body with tape and stickers with little metal BB’s in them so they can aim the radiation machine just right.  They put the mask on my face and snap it into place onto the table.  I can’t move my head at all and can barely open my mouth to take a deep breath and hold it when they tell me to.  The therapists tell me not to move and then leave the room because radiation is dangerous.  Ha!

BB sticker/marker

The dreaded mask.

The radiation machine moves all around me and a therapist’s voice comes on the intercom and tells me to hold my breath.  I hold my breath until I feel like I’m going to pass out only to be told to do this over and over about ten times.  The machine makes a beeeeeeeeping sound while I hold my breath to indicate that radiation is being emitted.  I can’t feel it and it doesn’t hurt but knowing that it’s there is eerie.  I think to myself every time as I hold my breath for ten years, ‘Don’t you dare move.  You don’t want that crap going anywhere but through that tumor.  Hold your breath, come on, just a little longer.  You can do iiiiiiit…”  Yeah, until I can’t anymore and I gasp for air so the machine has to stop.  If my first session had gone this way, I would have counted myself lucky.  But it didn’t.

The Machine.

It was my first session so everything took a little longer of course.  What nobody was counting on that day was for the camera that lines me up to stop working.  By that time, the therapists had done a ton of prep work with my head strapped down on the table for the past hour.  They couldn’t let me off the table until they fixed it or else I’d have to do it all over again and it would further push back my treatment.  And so, I had to endure.  During the next hour, my mind started racing and I started to spiral into the black hole my thoughts were pulling me into.  Therapists kept coming in and apologizing and trying to reassure me that they would be done soon but it made no difference to me.

The skin on my face hurt from the plastic mask pushing up against it.  The back of my head was throbbing from being pulled so hard and for so long into the hard table.  I began to repeat Psalms 23 over and over in my mind and praying to God to keep me calm and collected.  It worked at first for about twenty minutes.  Then it began.  I started to feel the panic creeping in and tried to keep it at bay but to no avail.  I wanted to move so bad but I couldn’t let myself for fear of having to do it all over again.  I was incapacitated and panic became my master.

I began to sweat when I had the absurd thought that I’d been forgotten and that nobody would ever come back to set me free from my mask prison.  As my eyes began getting misty, I told myself to stop being a big baby.  The tears inevitably started streaming down my face and rolled to the back of my head making it even more uncomfortable.  The therapists knew I’d started crying because the machine noted my irregular breathing.  They kept trying to reassure me over the intercom and I tried to stop crying but it was like a flood gate had been opened.  Once open, they’re impossible to shut.

After what seemed like an eternity, they were finally able to give me my first radiation treatment and let me off the table.  They took the mask off first, of course, and helped me sit up.  They wiped the sweat and tears off my bald head as I rubbed the back of my throbbing head and promised me it would never again take this long.  I was doubtful about that in that moment and I just wanted to run away screaming in the opposite direction.

I’d stopped crying when I re-joined my father in the waiting room but he could tell anyway that I’d had it rough.  I thought I was ok until we got into my car and I looked in the mirror.  My face had the odd honeycomb design from the mask etched into it and I began to sob.  I was looking at the face of someone who had just totally lost it and panicked.  I felt sorry for myself and proceeded to give in to my pity party of one.  I don’t feel ashamed to say that I cried for a good 20 minutes straight.  I’m an imperfect human and it was impossible not to.  Now I know exactly what claustrophobia feels like.  This was one of those experiences that you don’t ever wanna go through again, you want to completely forget it, and you don’t wish on anybody else no matter what.

That was my first impression of radiation.  Not good at all.  Since that first time, I’ve had 11 more rounds and the therapists proved themselves:  it has never again taken that long.  It’s actually been rather pleasant other than the honeycomb etching on my face afterward.  My therapists are all so friendly and I’ve come to enjoy being able to see them on a daily basis.  One of them even reminds me of Mr. Chow from ‘The Hangover’ and I can’t help but laugh to myself when he talks to me.  Good thing he’s funny.

And so, my relationship with radiation, although not perfect, has begun to improve.  I was told by Dr. R today that I will probably start experiencing the effects of radiation by next week.  I’m stand-offish toward radiation about that but at least we are starting to get along especially since Dr. R gave me the BEST news today that I’ve gotten since I can’t remember when:  the tumor is SHRINKING!!!  Yes, shrinking!!

Jump for joy, scream and shout, clap my hands, and thank you Jesus!

Oh, radiation!  The rock in my shoe yet my Obi Wan-Kenobi.  I hate that you are my only hope but you are WORKING!  Now I must end this blog so that I can go dance a jig.  A haiku and a jig all in one day for radiation.

Things are definitely looking up.

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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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