Tag Archives: chemo

And it starts. Again.

So I completely lost it tonight.  I wasn’t expecting it and I didn’t think it would happen.  Why should it?  Its not something I haven’t been through before.  I promised myself that I would not cry when I started to lose my hair again but the tears came anyway.

It happened at home after the most perfect night out with my husband and family.  We ate dinner out on the water in the most beautiful weather and walked downtown enjoying live music.  I held hands with my husband and laughed and laughed with my family.  Meanwhile, in the most windy city on this earth, my hair was literally blowing away off my head.  Nobody could see it but I knew it was happening and I managed to put it aside all night.  At home, I went into the bathroom to stand next to the trashcan and began to run my fingers through my hair.

It’s astounding how much hair I was throwing into the trashcan.  Clump after clump.  Little bald spots here and there taunting me about the inevitable.  “You’re gonna be baaa-aaald, na na na na naaaaaah!”  I’d gone into the bathroom with the plan of ‘helping’ my scalp shed any loose hairs in an effort to avoid hair all over my pillow in the morning.  Instead I emerged from the bathroom with what had to be the most sourpuss look on my face because my husband took one look at me and wrapped his arms around me.

As he first hugged me, I thought to myself, ‘What is he doing?  I’m perfectly fine.’  As he kept me in his embrace those feelings melted away and gave way to how I really felt.  My face got hot and I kept telling myself to grow up and not be such a baby.  ‘Its JUST hair!’  Over and over.  My eyes welled up and I fought the tears but they came anyway.  They came like a flash flood, both unexpected and unwanted.

But it didn’t stop there, oh no.  As the tears flowed, the sobs joined in.  I began to sob like I hadn’t done so since I was diagnosed almost a year ago.  It was almost a sob of mourning.  In fact, it was. While I’ve learned and gained much on this journey, there are also things I’ve lost that I can never get back.  I’m not only mourning my hair but I’m mourning what it represents.  My husband asked me what I was feeling as I sobbed and I told him I felt tired, I felt afraid, and I felt angry.

I am mentally, physically, and emotionally tired.  My brain feels fried, my body has been run ragged, and my heart has scar tissue from multiple heartbreaks.  Just as I’m losing my hair, I’m losing things I’ll never get back.  I’ll recover but I know I’ll never truly be the same emotionally.  I’ve permanently lost that innocence, that naiveté that comes with never having had to go through something like this.  Unaffected simplicity is gone.  I’m afraid of what I have to do next to live.  I used to think I was fearless and now fear is a constant struggle.  Chemotherapy, nupogen injections, stem cell transplant; its all so overwhelmingly frightening.  Most of all, I’m angry.  I told my husband it would have been better for my hair not to have grown back in between treatments. Its hard enough to see your hair fall out once, but TWICE?  Give me a flipping break!  This is so unfair.

Its difficult for some to understand why its such a big deal when a cancer fighter loses their hair. After all, its just hair right?  Wrong.  While my hair grew back and as I gained weight, I was told time and again how healthy I looked.  Some said they couldn’t tell anything was wrong with me. That’s just it.  I’ve been able to lead a fairly normal life over the past couple of months because I have hair again.  Nobody gawked.  Nobody noticed me.  I was just another person at the mall or on the street.  A bald head is a big red flag that says, ‘Hey everybody, I have cancer!”

I’m in mourning for that ‘normal’ that I’m so quickly losing my grasp on again.  AGAIN.  Hair loss is the first outwardly physical confirmation of ‘I have cancer.’  Losing my hair makes me think of that every time I look in the mirror.  Its a symbol of what I’ve gone through and of what is yet to come. And that is HARD.  That is one jagged, little pill.

My husband held me in his tight embrace, wiping my tears until they stopped and telling me he loved me, hair or no hair.  I think sometimes he knows me better than I know myself and yet he hasn’t run away screaming in the other direction.  In an act of solidarity, he shaved his head bald before mine has had a chance to fall out.  Tonight as I go to sleep waiting for my hair to leave me again, I know I am loved.  “Buh-bye hair!  Na na na na naaaah, he still loves me!”

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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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Chemo Week – Part I

WARNING:  TMI (aka too much information) and occasional hints of sarcasm to follow.  Don’t say I didn’t warn you!!

Chemo week.  I call it septimana horribilis.  I am not making that up either!  Its Latin for seven-day period of horror, of shakiness, of the inability to act because of physical or emotional unsteadiness (Shout out to Pastor Mike with the Latin and/or Greek references!).  Don’t get it twisted; I am NOT that smart.  I googled ‘horrible week’ and have now christened this recurring week with the perfect Latin term.  Its really perfect in its definition because ‘horrible week’ simply does not convey the horribilis-ness of chemo.

Septimana horribilis begins every 3rd week with Wednesday, the day before PRE-chemo.  Chyeah!  There’s stuff in preparation for it!  I can’t just show up to chemo all willy-nilly.  I must first visit the lab so they can get samples of my poisoned blood to make sure I’m healthy (I use that term loosely) enough to get chemo in two days.  If I’m lucky, I get a phlebotomist that has done this to more than a few people so it doesn’t burn and turn to a nice shade of maroon or a beautiful green hue later.

Thursday marks pre-chemo day!  YAY!  I’m trying to tone down the notes of sarcasm but its a bit difficult in my delicate state.  I did it again.  (Refer to warning above.)  My day starts pretty early in the morning since I usually have to be checked in at the cancer center by 8:00am.  I get up and do the usual as any other person except after I brush my teeth, I must tend to my PowerPort or mediport.  What’s a mediport you ask?  Its basically a little plastic button with a wire attached that is surgically implanted in the chest right under the skin and a second incision by the jugular vein in the neck is used to fish the wire into the jugular.  The port has a squishy center through which drugs can be administered with a special power injection needle poked into the skin and into the squishy center (septum).  This way I don’t have to get an IV in my arm every time I go to treatment.  That’s right!  I have POWER INJECTION!  I’m bionic.  Jealous?

Mediport or Chestport

Tending to my PowerPort is actually kinda interesting.  I have a special lidocaine cream that I must ‘apply generously’ to the skin where the needle goes.  Now, don’t get lidocaine convinced with novocaine.  Novocaine is the awesome stuff that songs are written about that you can only get at the dentist.  I get the boring stuff.  I then get me some saran wrap and gift-wrapping tape, cover it up, and voila!  This home-made dressing always gets a chuckle out of my attending nurse.  Simple yet effective.  She then proceeds to ask me the same question every time before she hooks me up:  “Do you want to leave the needle in or take it out?”   I usually opt to leave it in as I come back the next day for chemo and prefer not to be poked twice.  Except that one time I wanted to wear that cute top to an event…but I digress.  The downfall to leaving it in is the dressing or more specifically, THE TAPE.  I’m not allergic but its still so itchy!  It makes me feel like Hulk Hogan and I want to rip off my shirt like him along with the tape.  Plus this dressing does nothing for my look and draws more than a few stares from strangers when they see it.  Kinda hard to miss and I don’t blame them.  I did it too.

Pre-chemo day is the day I get my lovely dose of Rituxan.  I’m given a hefty dose of Benadryl beforehand that instantly makes me feel like I’ve been hitting the bar at happy hour for a few too many hours.  I then proceed to take a groggy nap with my zebra print Snuggie for 2-3 hours (I really should send a letter to the Snuggie people, they are GENIUSES.  Maybe they’ll send me a green one for lymphoma!  But again, I digress.).  Rituxan is the “R” in R-CHOP, my specified chemo cocktail.  CHOP stands for four different big-word chemo types I’m given the next day on Friday.  I don’t even know how to spell them so I suggest you Google it if you really need to know.  The whole slow drip (drip. drip.. drip…) process takes about 4-5 hours while I sit in a recliner in a huge, cold room lined with more recliners, all full of fellow cancer fighters attached to their drips.

TMI alert:  I visit the restroom at least 3-4 times because of all the liquid being sent into my body, but then again I’m not the only one.  Its typical to see a line of people pushing their portable IV poles to the only restroom we have.  I hate when I get one with rusty wheels that squeak because then everybody looks up to see who it is and they know exactly where I’m going.  There’s always a sad game show or soap opera playing on the tiny, too-far TVs that nobody’s paying attention to anyway.  There’s people of all ages, sizes, and stages of cancer.  I tend to see some of the same usual suspects, but unfortunately there’s always a newbie.  There’s a young woman about my age I always see but have yet to work up the courage to sit next to her, I don’t know why.  We always smile at each other with the same sheepish smile that says, “I know.”  Maybe this is all we both need?  Words have a way of getting in the way, a look can convey it all.  Sometimes I’m lucky and I get to sit next to an interesting/funny/inspiring fighter.  Most people keep to themselves and sometimes that’s just how I like it…I’m guessing they do too.

I know pre-chemo is over when my attending nurse comes over with the blood pressure gauge and thermometer.  She then proceeds to flush my PowerPort with a liquid that (I swear) tastes the way a skunk smells for about 3 seconds.  My ‘educated’ guess is that I can taste it is because the wire is in my jugular, close to my head where my nose and taste buds are located.  She leaves the needle in as requested beforehand and sends me on my merry way with a reminder card for tomorrow’s chemo appointment.  Thursday’s pre-chemo is officially over although the effects of Benadryl still linger.  At home, my dogs benefit from this effect as they get to take a nap with me in bed, a rare treat for them.  I fall asleep to Coby making piggy noises while he ruffles the bed to find his perfect spot and Flower already asleep smashed up against my side…this part, not so horribilis.

To be continued…

 

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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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