Friday, May 24, 2013

Mama, I'm Going To Listen To You...

...because you have cancer.

Oh. Mah. Gah.

Give me a bone marrow biopsy now.

It would be a less violent stabbing than hearing your 5 year old utter those words.  Although, it wouldn't be the end of the world if she was capable of following through.  Anna doesn't really understand what cancer means.  She is using the vocabulary we used when explaining what was happening to me.  Right now, it is utterly meaningless to her.  Actually, right now, it means to her that there are more babysitters and Mommy leaves the house without them more than ever before.  It also means Mommy lays down a lot, but in her world, Mommy's that are having babies lay down.  So basically, right now, cancer to her is no big whoop.

In the next few weeks, when my hair comes out, I imagine that will start to make an impact.  I will look sick.  Right now I just look pregnant.  Regardless of whether or not she is able to follow through on her promise of listening, I vacillate between sadness that my daughter has to think about modifying her behavior because she is aware that Mommy is having a hard time, and pride that she is capable of even wanting to modify her behavior because Mommy is having a hard time.  In the end, I know it is positive that she trying in her 5 year old way to respond to someones needs.  I just wish they weren't her Mother's needs.  At 5, she should just be needing me.

Julia and Adam are basically clueless of course.  Adam is suspicious when people come in the house because that's a sign that Mommy is leaving.  Julia asks sometimes to see my arm because she knows that's where the medicine goes in.  She actually thinks the medicine is in there somewhere she can see.  That's hard to explain because she's at that concrete stage and takes everything super literally, but it's way easier than answering a question like "Why is this an apple?", so I'll take it.

Madeleine has asked repeatedly about my hair.  It is heavy on her mind.  I've received strict instructions from her that my wig selections must be my natural hair color.  It's weird because on the one hand, it really is just about the hair right now.  On the other hand, it is evidence that this is impacting her, that she is thinking about it, and that she has concerns.

Owen asks questions that primarily focus on the science of the disease and my treatment.  He is his Dad's boy.  He want's to know why it makes me tired.  He wants to know why we have to be careful about germs.  He wants to know why my hair will fall out.  It would almost seem completely clinical and scientific if I didn't see the tense look on his face that he thinks he is hiding.  Owen is not a big talker.  I want to know what he's feeling but he will not, and quite likely cannot, tell me.  Blessedly, he will at times talk to his Dad.  Thank you God for Michael who understands Owen and his strong silence (and thank you God for the teeny bit of empathy Michael gets for me when he gets frustrated by Owen not sharing his feelings, hehe.).

Luckily, before we began talking to the kids about my cancer, I read a great book.  I read eleventy billion books!  Who am I kidding?  But the best one was When a Parent Has Cancer: A Guide to Caring For Your Children, by Wendy S Harpham.  It really prepared us well for how to answer questions and the best way to phrase your answers in a way to be simultaneously truthful but not terrifying.

But still, I don't want to hear any of my kids say "You have cancer.", because it means they are going through something challenging.  No matter how much I know overcoming challenges is actually good for them, it hurts.  I'd rather them overcome their own challenges instead of being dragged through mine.

Sunday, May 19, 2013

Viva la Immune System!

I've never been a hand sanitizer kind of Mom.  I've always been an "immune systems get stronger by doing their job" kind of Mom.  I've never been the Mom who treats every fever.  Once again, my attitude was that a fever has a job to do and I'm not going to stop it unless absolutely necessary.  Don't get me wrong, I didn't love when my newly potty trained preschooler seemed to touch every blessed surface in the playground bathroom, but, once we were out of there it was off my mind.  Fast forward to cancer treatment...the viva in my immune system has started taking it's hit from the Chemo and suddenly I'm wearing gloves to change diapers and using hand sanitizer trying to remember to use hand sanitizer and just generally having to change our approach to everything.

I don't even remember the last time I had a fever, then last week for about a half hour, I had a fever of 99.2. That normally wouldn't matter, except that if I have a fever of 100.5 or higher I have to go to the emergency room because my body can't properly fight infection.  Going to the emergency room would mean even more upheaval for my family than there already is so for about a half hour last week I was really sweating that 99.2.  It went back down, but it really brought home my new reality.  It felt so melodramatic, so crazy, to be worried about a low grade fever.  It was very humbling.  I'm supposed to take my temperature 3 times a day.  Like a crazy person.  I have to do it, but it just feels like the the behavior of a crazy hypochondriac.

Going into the blood work that preceded my 2nd treatment I felt pretty full of myself.  Other than a very brief, very low fever, I was sure I had managed to buck the system and get Chemo without taking a hit in my blood counts.  Surprise!  It turns out, that despite my arrogance-- I am subject to the same biological rules as every other human being!  When I have Cytotoxic substances pumped into my body they kill stuff.  Huh.  You know what's good about this Chemo thing besides the curing cancer part?  It's going to take me down a few pegs, hopefully many pegs, because I'm literally that delusional that I thought I'd sail through this without taking any hits to the bodily systems that Chemo always attacks.

For the foreseeable future microbe management will be part of our life in a big weird way.  I'm not clear on how that's exactly possible with 5 small active kids.  My hope is that for the spring and summer my counts will be high enough and our playdates and activities will be outside enough that we'll be able to keep things pretty normal.  Once the baby is born and I continue treatment I guess things will be pretty much the same as when I've had any other newborn--into the baby cave we go.  We'll just stay in longer this time.

I try to remember that by this time next year I'll be a germ fighter again, and I can just go back to letting my immune system take care of business.  Until then, I have to learn some humility.  Pass the hand sanitizer.

Wednesday, May 15, 2013

Look Mom! I'm a Biohazard: My Adventures with Chemotherapy

As I write this, I'm getting my 2nd chemotherapy treatment.  When I'm done this afternoon, that will be 2 down, 10 to go.  The treatment regimen I receive is referred to as ABVD.  Each initial is a drug they pump into Mama.  But first, before they give me that stuff, I get glorious anti-nausea medication.

I have not experienced ANY nausea since my first treatment.  Well, that's a bit of a falsehood.  I've had a few occasions of nausea in the 2 weeks since my first treatment but they had nothing to do with Chemo.  If you ever, God FORBID, find yourself pregnant and getting Chemo, don't store high quality Polish sausage in your fridge because no matter how much you enjoy it the smell may be a challenge.  I know you're here for those kinds of tips.

The thing about Chemotherapy, especially when you're pregnant, is that it goes against every instinct you have as a human being.  In 21st century, first world suburbia (1st world is really implied by suburbia, no?) paranoid self denial during pregnancy is practically a blood sport amongst young mothers.  No sugar, no soda, no soft cheeses, no cats, no beer, no smoking blah blah blah.  Relax people.   Obviously soft cheese and smoking are not the same level of threat.  But to new mothers especially, soft cheese or soda or whatever gets elevated to DANGER status and the idea it might cross your lips, let alone your placenta is to be avoided at all costs.  I'm not going to lie, after pregnancy number one, this girl would enjoy a Pepsi, and don't think I didn't see those sideways glances first timers...I used to make those judgments too.  When you're a first time mother, trying desperately to do "everything right", a pregnant woman drinking Pepsi might as well as admit that Pepsi will be going in a baby bottle in nine months.  Yes, that's right, you will be marked as a bottle feeder.  Cue shudder.

I digress, all I'm trying to say is if you see soft cheese as poison, pumping in actual poison is really difficult.  Am I saying that means all pregnant women should have a free for all?  No way, but I've realized that sometimes in our quest for control we can lose sight of how amazing our bodies are.  My body can grow a healthy baby and protect her from this poison and fight this disease all at once.  Because it's a bad ass.  Praise God who created it.  Praise God who gave humanity an intellect capable of studying His creation and developing treatments that will allow all 6 of my children to have their Mama.

Back to chemo.  Long and short of it is the whole thing is yucky, unpleasant, unnatural, and a blessing.  It is a blessing because it will cure me.  It is a blessing because I get to spend a few hours with Michael and watch TV, and drink all the free pop I want.  Because seriously, they're pumping me full of straight up poison, so a little pop can't hurt right?  Plus they say things I consume whilst being poisoned will become things I can't stand when treatment is over.  Since I have almost zero will power to avoid things that aren't good for me, I might as well live it up and get aversion therapy at the same time.

Can you believe I wrote all that while I was being poisoned?  Pretty soon I'll be pretty loopy.  Well, I guess you can be the judge of whether or not I'm loopy yet.  Did the preceding paragraphs make any sense?  People who didn't always behave themselves in their late teens and early twenties have told me that the feeling I experience after my anti-nausea meds can be referred to as "post buzz/pre-puke".  It means you are a tad silly and sometimes a square of sidewalk seems like a perfect place to take a nap so you should really have supervision.

In the next week, I will be so so sleepy in the afternoon and also super dizzy.  But after day 5 or 6, each day will get a bit easier until I feel like I can rule the world.  Then, 15 days from now.  I'll start over.  My anti-nausea meds are done, which mean s***'s about to get real.  So, as I tell the nurse as she injects my IV with doxyrubicin "the red devil", let's kill these son's a b*****s.

Tuesday, May 7, 2013

Getting Staged, But Not In a Fun Theatrical Way

When you catch the cancer, things are only beginning after your diagnosis.  Now you need to know how much of the cancer you have.  This is achieved through different types of imaging.  You can expect to have a CAT and/or PET scan.  If you're pregnant though, you can really only have MRI's.  So I did.  I'm not going to regale with with a blow by blow of how that was, but I'd just like to say that when you are going to put someone into a tube the size of a drinking straw, it is disingenuous to ask them if they can handle being in an elevator.  NOT A COMPARISON MEDICAL COMMUNITY! NOT EVEN CLOSE.  PLEASE WORK ON YOUR COMMUNICATION SKILLS AND STOP LYING.  I didn't think I was claustrophobic until I spent an hour in that puppy.  That's all I have to say about that.

I would complain more about being shoved in a drinking straw, but before the MRI, my perspective on medically inflicted discomfort underwent a cataclysmic shift when I had a simple little procedure call a Bone Marrow Biopsy.  That is a procedure that is so unpleasant they do not even try to give you a pep talk about it.  If you powered through my last post you know how much I heart being stabbed.  This time they stabbed me in the butt, into my bone.  Once again a local anesthetic is administered but your nerves want you to know unequivocally that that is total bullsh**, so while the skin and muscle part of you are like "we can't feel anything", your nerves just scream at you.  The very kind Nurse Practitioner who we love and who we are very grateful is part of my team said "if you need to scream, just scream".  My understanding is that this was meant to be comforting and an indication that I was in a "safe space" wherein there would be no judgement for how I withstood the discomfort of being stabbed in the butt.  Unfortunately, when you are being stabbed in the butt you are automatically not in a "safe space".  The suggestion that screaming might be a normal response to this procedure makes it more challenging to maintain composure.  Luckily, Michael and I are quite the team, and he doulaed me through that ordeal like a star.  We basically crushed that.

In the end, it turns out my marrow is clean as a whistle, YAY!  But, not yay, there is evidence of disease in nodes near my liver and in my chest.  BUT, yay again, that does not really impact my prognosis, just how much treatment I need.  So, rather than waiting for me to deliver to begin, I will have 6 chemotherapy treatments (2/month) until I am induced at 36 weeks, and then 6 more treatments after the delivery.  I am formally considered to have Stage IIIa Hodgkin's Lymphoma.

*Small brag:  I had a pulmonary function test to check that my lungs could withstand chemo and I CRUSHED it.  Try not to be jealous, but I was informed by a medical professional administering said test that I follow directions better than elderly folks who have hearing loss and early onset dementia.  It's a gift.

Diagnosis Cliff's Notes

*Stream of consciousness warning--Forewarned is forearmed.*

When last we met I was getting PTSD in a Wegman's bathroom.  I had just found out I was pregnant while preparing for a lymph node biopsy.  I essentially found out I was pregnant and I had cancer.  Actually though, it wouldn't be 3 months until I would be given my formal diagnosis.  Here is the rundown:

I had a core biopsy with a local anesthetic because of course, no sedation in the 1st trimester.  It was not the worst thing in the world, but it is really difficult to lay still when people are stabbing you in the neck.  While you are awake.  Yes, they numbed it, no I couldn't feel the pain of the stabbing, but I knew what was happeing.  It's easy as humans to forget that we are animals.  Well let me tell you, regardless of the fact that you intellectually understand that this procedure will lead to life saving information, regardless of the fact that you give your consent, and regardless of the fact that the whole situation is dressed up with civilized medical behavior, when someone is coming at your outstretched neck with a sharp object...well, everything deep in side the most primordial core of your being starts screaming out "AWWW HELLZZ NO!!!".  My primordial core is urban.  Anyhoo, you'd be amazed how perplexing it is to medical professionals that a normal person might find being stabbed in the neck, even with your consent, a tad disconcerting.  Seriously doctor, it's not personal, I'm sure you're very competent and compassionate, BUT YOU ARE STABBING ME IN THE NECK.  Now lest you think I was flopping around like a fish on the table screaming for my Mom, I was not.  I have birthed 5 children.  4 of them with no pharmaceutical assistance.  I am a bad ass.  But I did startle a bit when they started the procedure.  Sue me.  YOU WERE STABBING ME IN THE NECK.

What's that?  What were the results of that procedure?  They found atypical cells indicative of Hodgkin's Lymphoma but the results were inconclusive.  Which we knew to expect at that point.  Basically it went like this: "So, Nella, since you love having your neck stabbed, these results earn you an opportunity to have your neck filleted like a fish.  We need the entire node."  Yay!  So we went to see a surgeon at the local cancer center and I was monitored by a surgeon until my 2nd trimester, when it was safe to sedate me.  We casually waited for about 2 more months knowing I was "cancerish", until I could finally get cut open and have some answers yanked out.  The surgeon was wonderful and being sedated made the whole thing a breeze.  I wish I could say my previous experience helped me to tone down my inner monologue, but I can't say that.  I just don't like to be stabbed or cut.

After the filleting, I mean surgery, we got a formal diagnosis.  Classical Hodgkin's Lymphoma.  Fo sho.  Which, honestly, was a relief.  Not only might we find an answer to my itching, it meant my exhaustion was not because I suck at life.  It's weird to think you could feel relieved about having cancer, but HL is the cadillac of cancers if you ask me.  It's highly curable and the treatment regimen is mild compared to what most cancer patients go through.  The pregnancy of course made it stressful, but if I had to wait to be treated, I could be ok anyway, and if I needed treatment, the baby could be safe as well.  Are we blessed or what?

I'm not going to lie, I kept it together that day until we were walking to the car.  Then I let myself break down a bit.  Not for me, but for my baby.  Not for me, but for my husband.  Not for me, but for my kids.  Not for me, but for my family.  This will be harder on them than it is on me, and for a wife and mother, that is the worst suffering there is.

Thursday, May 2, 2013

The Wegman's Bathroom Gives Me PTSD or: How I Found Out I Was a Pregnant Cancer Patient

Last we met, the chiropractor had just dropped a bomb on me.  She didn't know she had dropped on a bomb, but she did.  I had been researching my extremely itchy skin and kept coming across Lymphoma as a possible cause.  Without other symptoms, most notably enlarged lymph nodes, I kept dismissing it.  I had clean blood work, and while I was exhausted all the time, I had 5 small kids and figured I just sucked at life. But when the chiropractor felt a lump in my neck, well, I knew things were 'bout to get real.

I scheduled an appointment with my GP the next week and set about focusing on preparations for our homeschool group's Epiphany Play.  I was a co-coordinator of the event and had basically neglected preparations for it because of Christmas.  I tried to concentrate on the play and getting things done but I couldn't stop thinking about my neck, and was beginning to suspect I was pregnant.  The pregnancy part was easy to ignore because I always think I'm pregnant and figured I was being paranoid.  Stay calm Nella.  I somehow made it through the play, but not before taking 2 pregnancy tests (both negative, although I knew it was too early) and constantly feeling my neck to see if the stupid lump had gone away (it had not).  Stay calm Nella.  My appointment with the GP finally came and he sent me for blood work.  If it showed any sign of infection we could assume that my lymph node was just reacting to that. If it was clean, I would need an ultrasound.  Stay calm Nella.  Well, I needed the ultrasound. STAY CALM?! SERIOSULY?!  The ultrasound said I needed a biopsy.  I AM CALM!  THIS IS ME BEING VERY CALM. Don't worry, my GP said, it is a simple procedure wherein the doctor plunges a needle INTO YOUR NECK.  No big deal.  ?!?!?!?!?!?!? 

My biopsy was scheduled for January 15th, there was a weird scheduling thing where I got to the place where the biopsy would be done, got psyched up, went into the room, and was made to wait a very long time while I tried not to think about the fact that I was ABOUT TO BE STABBED IN THE NECK.  A doctor came in and said "I'm so sorry, there was a mistake with your GP and we don't do the type of biopsy you need in this office.  You'll need to contact them and have them schedule you someplace else."  I don't really know how to explain what happens to you mentally when you're preparing yourself for something and then you are turned out unceremoniously.  It was truly a mistake, and mistakes happen, but at this point I was a tattered, fried, disaster of an emotional nutcase.  Everything in my introverted self said: "the only sane response to your life at this point is to go under the bed and never come out."  The thing about being a wife and mother, though, is that's not allowed.  

So I met with my "book club" instead.  "Book club" would be a safe place to recharge and calm down. The next night my "book club" and I met in the Wegman's cafe like we tried to do every other Tuesday.  We get together and sometimes we discuss a book, but always we support each other, commiserate with each other, laugh together, and cry together.  I got to Wegman's early and that niggling suspicion I was pregnant popped up again.  I thought I'd just take a test really quick in the bathroom and when it came up negative I could just relax and get my period.  It might seem strange to take a pregnancy test in a public bathroom, but when you need to know, you really need to know.  I bought a test, went in the Wegman's bathroom, and peed on the test like I had done kajillions of times before.  My heart was pounding out of my chest, and as the pee slid across the test under those little plastic windows time stood still.  First up popped the control line, and then, HOLY CRAP THIS CANNOT BE HAPPENING.  A faint line appeared across it.  Much more faint than positive tests I'd take for other pregnancies.  Those had always shouted at me, this one seemed to be whispering.  HOLY CRAP HOLY CRAP HOLY CRAP.  Tears stung my eyes and I could taste my heart beating at the top of my throat.  I thought I might throw up.

I put the cap on the test , stuck it into my purse, and shoved the package into the bag.  Somehow I made it upstairs to the Cafe seating area and sat down to meet my friends.  (Some of you right now might be thinking "why did you put freshly urinated on item IN YOUR PURSE?!?!?!  Well, I'm a Mom, and at least for once it was my urine.  Also, I was in the middle of a flippin' Liftetime made for TV movie so my judgement was compromised.)  I figured that when the time was right, I would take out the test and they could all tell me I was mistaken, and paranoid, and very mistaken.  They would tell me there was no way I could be pregnant because my life in it's current state was already insane and I was nursing 2, yes you heard me, two children.  They would also point out I was going to be stabbed in the neck in 2 days to find out if I had cancer so obviously I was not pregnant because this is not the Lifetime TV network. 

I don't exactly remember the particulars after that, but friends arrived, at some point I pulled out the test.  The looks on their faces and the tears in their eyes told me I was not paranoid.  I insisted it could be negative.  So, naturally, my very pregnant friend picked up another friends newborn, and went down into the store with my credit card to buy 2 more tests and a bottle of water.  The two more tests were to have clearer symbols like saying "Pregnant" or "Not pregnant", because while it's not always necessary sometimes it is so so necessary.  I remember saying how we'd laugh someday about the pregnant lady holding a newborn buying a pregnancy test, and we did laugh a bit through our tears.  I remember praying and praying and praying.  I remember the tests and water appearing and drinking the water and going into the bathroom trying to look carefree and confident.  I remember peeing on the test.  I remember my life crashing down all around me in the Wegman's bathroom.  I didn't have a diagnosis yet, and at this point everyone in my life thought everything would be ok.  But I just knew I had cancer.  I had cancer and now I was pregnant.  

I don't like to go into the bathroom at Wegman's now, which is tough because I like to shop there and pregnant girls pee a lot.  The first time I had to use the bathroom at Wegman's it all came flooding back.  The stall started to spin, I started to sweat and my heart was beating so hard.  I had to just fight back the tears and run to the car for an ugly cry.  Because I am pregnant, and I have cancer.