Tuesday, May 27, 2014

The Thing About Remission

My cancer is back.

I'm just going to come right out and say it.  The cancer is back.  It is back and I'm going to have a major butt kicker of a treatment plan that is starting June 2nd.  I'm disappointed.  So so disappointed.  I'm also hopeful.  That is the short version.  If you're into medical details you can keep reading.  If not, you've got the gist.  I have cancer.  Again.  But OH! OH!! I'm not pregnant this time so there's that.  Since I'm not pregnant I get all kinds of red carpet luxuries like general anesthesia for surgery.

Remission is a history report, not a promise.

The thing many people don't understand about remission is that it doesn't mean you are cured.  You have to have 5 years of remission to be considered cured.   I understood that totally, and even felt a little funny when I would post about remission on the blog or on Facebook.  I knew that remission wasn't a promise, but I also knew many people don't really get that.  I felt like I was leading my friends and family down the primrose path, but I also knew any time cancer free was worth celebrating.  I don't regret any of those posts because those milestones came with real joy and real accomplishments and those were real months where I could be present with my family and serve them and set goals for myself and work towards achieving them.  So, while in some ways posting about remission felt like whipping up false hope, it wasn't false hope.  That was real health and real time spent living this beautiful life I've been blessed with.

Unfortunately, that doesn't change that remission isn't a promise of days ahead.  It's really just a history report of healthy days lived.  When they scan me during remission checks the truth is that they can't guarantee the next three months, they can really only say: "The last 3 months seemed fine, and hopefully the next 3 should be ok too."

So how did this happen?  Cancer is a tough enemy.  It can hide just one cell in your body, waiting to start growing again.  It can be totally eliminated and your DNA can start switching switches and BAM, it's back.  There was nothing in my past diagnosis, staging, or treatment that would have indicated that I would be in the 10-15% of Hodgkin's patients that relapse.  Even pregnant, I was as low risk as low risk could be.  That's why understanding statistics is important.  Numbers are numbers even when they're people.  Even when they're people you love.  Even when they're you.  Someone has to be in that 10-15%.  That someone, this time, is me.

How did you know the cancer was back?

Well, in a weird way cancer helped me catch itself this time.  I learned through my last treatment the importance of being confident in my experiences and intuitions and being assertive about voicing them when I felt something was off.  My natural impulse is to doubt myself and assume that I'm being oversensitive and overdramatic and not tough enough.  I learned during my last treatment to tune into what my body is telling me and to think it through and be ready to communicate to the best of my ability.  I learned to believe in myself and to advocate for myself. 

One day I felt a flare of itching on my ankles and my heart dropped into my stomach.  Please, God, no.  But the thing about itching as a symptom is that plenty of people itch for a gajillion reasons that are not cancer.  It's just something humans do.  But, it was that itch.  It's just different.  It's not on top of my skin, it's down way underneath and has a raw burning quality even though the skin on top looks totally fine.  Instead of telling myself I was crazy I made a mental note, said a prayer, and decided that if it happened again I would take it seriously.  It was such a short little flare, about 2 minutes, and then it was fine.  I also knew I had a CT scan coming up and I figured if it happened again I would tell my doctor at my follow up.  I had 1 or 2 small flares and decided that yes, I would tell the doctor.

At my appointment following the CT scan I was told they saw a small area that was a bit enlarged but within the normal range.  I had a really bad respiratory infection during the scan so that could easily have been the explanation.  That's what lymph nodes do when you get sick.  They get mad and help fight the infection.  I almost didn't say anything about the itching.  The doctor was turned away and noting the respiratory infection in my chart and I managed to stammer out "I....um...I've had a few weird...I know it's probably just paranoia but...you see I just had a few very small flares of itchingandIknowI'mjustbeingparanoid.  Hehe.".   Well, her head just snapped right around and she looked right at me so seriously.  So I started in again: "I mean I know people itch all the time but it just makes me a bit nervous because it's the same quality as before and I just thought I should tell you and I know I'll get scanned again in a few months and I'm sure it was nothing but I thought you should know.".  Then she started writing in my chart.  Crap.  "You were right to tell me.  We'll keep an eye on it and it's likely fine, but if it happens again you need to call.".

Doctors love to say: "It's a straightforward procedure." 

About a month later, I had to call.  I had a few other little flares of itching.  When I say flares that actually makes it sound worse that it was.  They were just whispers of that old itching, but it was still had the same character and quality as the really bad itching before my last diagnosis.  I called the doctor and Michael and I joked that now we would get empirical proof of how crazy I am.  I was scheduled for a PET scan the next week and we were really nervous but tried to pretend like it wasn't happening and joked a lot about how crazy I am.  We went to the follow up after the PET scan and we were nervous but hopeful.  The nurse practitioner came in and sat down and said:  "The PET scan lit up so we're going to need to do a biopsy.  It's a very straightforward procedure."   CUE TO ME LOLOLOLing and interrupting:  "No offense but according to you guys it's almost always a straightforward procedure but YOU'RE NOT THE ONE GETTING CUT OPEN TO FIND OUT IF YOU HAVE CANCER!!!!".  Then she was like: "......yeah...."  I laughed a bit more and then finally let her explain the procedure to me and then my oncologist came in.  And she gave me a long hug.  A long one.  I knew why, because I already knew at that point what the biopsy would show.  I just knew.

She told us that in Hodgkin's patients that have PET scans light up this soon after remission the chance that the cancer has returned is 50%.  She told us it was also possible that it could just be some other infection or my Thymus coming back online after Chemo and being a bit overactive.  It was nice to have those options to cling to, but I already knew.  I also knew I'd have to pretend for everyone that I didn't already know I had cancer again.  I asked what we would do if it was cancer.  The three words that I heard next hit me so hard, like a hit to the face, stomach, and groin all at once.

Bone Marrow Transplant.

Tears.  Gasping for air that seemed inexplicably to evaporate from the room.  Bone Marrow Transplant.  I don't know how I got up the courage to ask the next question:  "If I have to do that, what are my chances?".  Pause.  (Doctor collects herself as if to recall lines from a script): "In Hodgkin's patients the prognosis is 50%."  

Jesus deliver me.  I lost it.

I could hear my dear sweet doctor telling me we had to positive and that we could do this and that we needed to wait for the biopsy.  

But oh Jesus, please PLEASE take this from me. 

I calmed down enough for her to give me an overview of what the treatment plan would entail but I was too upset and too "just thrown into a washing machine on the spin cycle" to understand anything other than "inpatient treatment" ie. a lot of time away from home, and "blood transfusions" ie.  gross.  And then suddenly we were in a numb fast forward in slow motion where we met with a surgeon, scheduled a surgery where bonus(!) I would be under general anesthesia because I'm not pregnant this time.  And then another numb fast forward in slow motion to the day of the surgery where I got put under and then woke up and vaguely remembering Michael telling me they thought is was Hodgkin's as I fell asleep again.  When I finally woke up from the surgery I asked Michael if I dreamt that and he had to tell me that I didn't dream it.  The pathologist who was present at my surgery thought that it was Hodgkin's but there were more tests they had to run.  I already knew.

As I type this I'm recovering from surgery and I have now received confirmation that my cancer is definitely back, and June 2nd I will begin treatment.  If you're still reading you are a really patient nice person because I haven't even told you what they're going to do to me yet.  You can drop out at anytime.  Seriously.

What's the plan?

I'm having an Autologous Bone Marrow Transplant.  That means they will actually use my own stem cells for my transplant so there are no concerns about matching a donor or about Graft Versus Host Disease.  I'm still semi fuzzy on all the details because we haven't met with my transplant team yet.  What I know for sure is that this Friday, May 30th, I'm going in to have a Medi-Port put in.  I didn't have one last time because YUCK but this time, for the amount of pokes and the ornery nature of my veins it's a no brainer but it's still yuck.  The medi-port is a thing they surgically implant under the skin in my chest to make it easier to give me stuff intravenously as well as to draw blood.  The following Monday, June 2nd, I'll be admitted into the hospital for 3 days, during which time I will receive continuous chemotherapy that is much more powerful than the chemo I got last time.  This time I'm receiving chemo called ICE.  I will be really sick most likely WAY sicker than last time, I will lose my hair again, I will need to be monitored constantly even after I come home after the initial three days in the hospital.  I will likely need transfusions of blood and platelets.  I will be at a much greater risk of infection than I was the first time when I "just" got ABVD chemo.  3 weeks later, if my blood has rebounded adequately and I don't have an infection, I'll go back in for 3 days of chemo.  

Hopefully, after doing the ICE chemo twice, there will be room in the Bone Marrow Transplant Unit for me.  If there isn't I'll have to do another cycle of chemo.  If there is a bed for me, I'll be given shots over a course of a few days that will force stem cells out of my bone marrow and into my bloodstream.  The stem cells will be harvested and frozen in preparation for the transplant.  Then I'll get a course of even more powerful chemo and I may or may not get radiation as well.  When my entire immune system is good and dead, my stem cells will be given back to me intravenously.  That part is the actual transplant.  Gross right?

Then we wait.  I will be supported with blood products and antibiotics until, God willing, my bone marrow begins to repopulate and produce healthy blood on its own.  During this part of the process I will be hospitalized in a specialized unit for 3-6 weeks.  Three.  To.  Six.  Away from my husband and babies.  

That's an overview, we're still a bit fuzzy on some of the details and chronology because frankly, we are still in shock.   We are disappointed and we don't want to do this.  But we're going to do it.

To summarize:

Bad Things
  • My cancer is back
  • I'm having a Bone Marrow Transplant
  • I'm going to hospitalized a whole lot
  • I'm going to be really sick
Good Things
  • We caught it really early
  • There is a very small amount of cancer
  • My prognosis is better than that initially quoted 50% because:
  •  I'm young (they transplant patients up to age 75)
  •  I'm healthy (so much that each time I see a new nurse or doctor their jaw drops, I'm working on swimming a mile people!)
  •  I'll be going into transplant in remission which isn't always the case
  • We have the most incredible support system
Please pray for my husband and children, this is going to be so hard on them.  

This is going to really be yucky and really difficult, but I'm going to let Emma Stone tell you why it will be ok:

All I do is WIN.  Drop the mic.

Thursday, May 1, 2014

A Letter To Me, One Year Ago Today

Dear Nella:

It's me, I mean, it's you from a year in the future.  I know you're starting Chemo today, and I know you're really scared.  I wanted to tell you it will be ok.

First of all, the baby is doing really well.  As I/you type this, she's army crawling around trying to stuff her beautiful fat cheeks with choking hazards.  Chemo is least of her safety concerns.

Second of all, yes, your skin is going to stop hurting.  You're going to wear clothes without weeping inside and you won't be covered in sores and scabs and scars anymore.  You're going to just throw on any old clothes, even jeans, and you won't have to figure out what will hurt the least and still cover up as much gross embarrassing skin as possible.  You won't even notice or think about your skin except to notice that "Hey, I'm wearing clothes like a person and I totally forgot!".  You have scars, but you don't really care, because you just don't.

I know you probably want some advice.  I know you're scared about what you'll see today.  We hate medical stuff and you're afraid that everyone will notice that you're trying to look at the ceiling without looking at all of the needles in everyone's arms everywhere.  You'll get over it.  You will never, however, be able to not look at the ceiling in the Phlebotomy area.  But not to worry, that doesn't mean you're a wimp.

You're scared about how it will feel and if you'll be tough enough to handle it and still make everyone think you're good at having cancer.  Please stop thinking that.  There is no such thing as being good at having cancer and there is no such thing as being bad at having cancer.  You're just a pregnant lady with cancer.  It's wildly inappropriate for you to put that kind of pressure on yourself.

Which brings me to my next point.  If something hurts or is uncomfortable TELL SOMEONE RIGHT AWAY.  Don't second guess yourself and don't tell yourself you're being oversensitive and that other people go through worse things in their lives.  Yes, they do, but you've given birth 4 times without drugs and you have a decent idea about whether or not you are in discomfort.  Please save us from a lot of needless suffering.  Please tell them when you're hurting instead of apologizing and explaining it away.  Chemo isn't supposed to hurt.  Well, the needle part hurts, but after that when they push the saline and start the bags it shouldn't hurt at all.  When they push drugs into your IV with a syringe it should NOT hurt.  You have ornery veins and when your chemo hurts it's because your line isn't in right, it's not because you're a whiny over-sensitive worthless baby.   Those nurses have their jobs because of sick people like you.  You are not inconveniencing them.  Tell them it hurts.

Chemo tastes bad.  Really bad.  Actually the saline they flush your lines with tastes bad and one of your drugs (the one that's usually the last push) tastes like...methane.  I guess that's the most delicate way to put it.  It tastes kind of like toots.  You will really need Jolly Ranchers for the saline and the toot one.  When this is all over the smell of Jolly Ranchers will make you physically wretch which may not seem like a big deal because we always thought those were overrated anyway but kids eat them so you will have to smell it sometimes.

I almost forgot--be serious about germs please.  Please be serious about germs and don't care what anyone thinks.  The baby is ok but you had her early because you were not serious about germs.  Let people laugh at you and judge you and then go ahead and be serious about germs.

Yes you will make it to Owen's first baseball game of the season tonight and no you won't throw up in a garbage can.  You'll just feel gross and weird but it'll pass and it will be bizarre to think of what just happened and to realize nobody there has any clue.

Oh and you know that thing you want God to use your cancer to fix?  It's not happening today or this week but don't give up.  You might just have cancer because you have cancer and that's ok too.  You're going to learn a lot.

That's all for now.  I know you know it will be ok.  You know it will be ok because of statistics and science.  You know it will be ok if you don't land in the good part of the statistics because it will just still be ok because God.  I want you to know the baby is ok.  The kids are ok.  Michael is ok.

I'll try to write to you before the next Chemo.  Be gentle to yourself.  God loves you.