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.

On Ash Wednesday, Would You Pray For Them?

I don't have much to say today, except to ask you prayers for some of God's children.

The entire Western New York community has heavy hearts this week, as we learned that Ben, a little boy I've mentioned here previously, has weeks to live.  Despite surgery and initial treatment his brain tumor has grown so inexplicably that he has been sent home to spend his last days in peace surrounded by his family.  The grace and strength that Ben's mother has shown through this ordeal are nothing short of a call to action for the Body of Christ.  We may want to cry and wallow in the unfairness, but if Mindy can find the strength to rise to this challenge, we must find the strength to pray her through it.  Please pray for this family.  If you feel called to do so, please donate to help them or for information about attending Ben's benefit.

I mentioned another child facing brain cancer here once before.  My friend Jeff's little girl was diagnosed with brain cancer around the same time as Ben.  Please pray for Ava and her Dads as they begin the arduous treatment process.

Finally, a friend of mine from college contacted me recently to let me know that she has been diagnosed with breast cancer.  Her cancer is in stage one and is very treatable.  Regardless of the great prognosis the treatment will be difficult and she has 4 small kids.  Please pray for Sweetie.

You may read this list and feel hopeless and helpless, and you are.  But God is not.  Please join me in praying that His will be done and His children be comforted.  Ben and his family, Ava and her family, and dear Sweetie and her family will benefit from them.

When You Assume...

That's me up there after those last two posts.

Get it?  I made an ass, not really out of you, but definitely out of me.  I ended up dangling from a metaphorical cart because I broke a cardinal rule of writing and I assumed you knew what was in my head without me communicating it as clearly as possible.

When I wrote the What NOT To Say To Someone Facing a Health Crisis I made some fatal mistakes.  I mentioned that each person's response to facing a health crisis will be different and that is so important to remember and I just did not emphasize that enough.  In fact, each individual response will be SO different that I followed up with a post about what you SHOULD do that effectively contradicted the first one.  I heard from dear dear friends who read the NOT post and felt like they had messed up somehow and that could not be far enough from the truth.  So I'm going to try to filter the mud I mixed up over the last 2 day and communicate things a bit more effectively.  

Clarification #1

I wrote those posts with a certain group of people in mind.  I guess I was envisioning that advice going to the friend/acquaintance on the periphery who was moved to act but was not necessarily close enough to the patient or family to be able to easily identify their needs.  What I realize now is that a) I didn't make that clear and 2) I didn't account for the extrovert-y types who don't really have this "acquaintance" category.  

Clarification #2

I originally wrote those posts remembering certain incidents where I encountered someone who, while still meaning well, lacked appropriate boundaries or was just so codependent that they didn't realize that they were making my illness about them.  These are a small minority of the interactions I had during my illness but they were the most draining and traumatic.  I generalized those to inform all of my advice and didn't emphasize that the majority of people who would want a list of do's and don'ts aren't the kind of people who would ever make it about them anyway.  I didn't think that through completely which created a situation where when I listed "I can't imagine" and "How are you?" as things you shouldn't say I alienated a lot of well meaning people because I wasn't clear enough about what I was trying to say.  

So What Were You Trying To Say?

I'd like to clarify my stance on "How are you?" and "I can't imagine".  These are likely ok for most people but understand, if you ask how someone is and they say "Fine", don't push.  Unless you are very very close to that person please respect whatever boundaries they are setting at that time.  Don't say "I can't imagine" and then fish and fish for "it's not that bad", or if you get "it's not as bad as it seems" or some such don't push and push for all the gory details.  You wouldn't put a veteran on the spot about what they've seen and gone through if you are not extremely close to them.  I'm not comparing cancer to war, but when you have cancer or watch a loved one go through it you don't go to the hospital so they can feed you Skittles while they braid your hair.  It is traumatic, it is grueling, and it's hard to discuss every single time you have a conversation.  So express concern, ask after their wellbeing, but don't push a cancer patient or their caregiver or someone else going through a crisis to make you into their confidant or savior.  I hope this helps clarify things a bit.

Ninety eight percent of the people we've encountered on the road to recovery have been nothing but generous and loving and wonderful.  One other thing I'd like you all to remember is that when someone is diagnosed with cancer, or loses a child, or faces some other awful crisis, they do not become a character in a movie.  They stay the same unique, flawed child of God they were before, so the same hang-ups, impulses, and baggage they had before the crisis will inform the way they receive your efforts.  The human spirit combined with the grace of God can meet immense challenges in ways that are incredible, this is true.  What is also true is that extreme hardship brings out all of our personal protective measures, so using me as an example, everything in me was screaming to get in the bunker and hide all the while I had to be out at appointments and accepting people into my home more than I ever had in my adult life.  This colored my interactions with everyone all the time so that there were times that well meaning conversations were just too much at that particular moment.  So if you do reach out to someone and it doesn't go how you thought it would, please have mercy, they are bringing so much stress to every interaction and that is going to cause some awkwardness from time to time.

Finally, I want you to know that I remember what it's like to be on the other side.  To hear about a situation that is (here I go contradicting myself) unimaginable and to short circuit at the enormity of it and your powerlessness to do what you most want--which is to stop it.  I know what it's like to want that person to know how deeply you feel for them and what it's like to realize nothing you say seems like it can do much good.  When you approach someone with love and prayer and your very best intentions, you will bless them.

 You will not take it away.  You cannot take it away.  

You WILL still bless them and lift them up.  

Back to you dear readers...help me sort this out...is that any clearer?

7 Quick Takes: What You SHOULD Do For Someone Facing a Health Crisis

5 posts down, 2 to go!  

I'm just chugging along and joining all the links ups I've been telling myself I should join and then never got around to it.  Today I'm doing a double Fulwiler.  I'm pretty sure that's what it's called in the biz.  I'm doing 7 posts in 7 days AND since it's Friday I'm also doing:

Also hosted by Jen Fulwiler

Yesterday I talked about what you should NOT say to someone facing a health crisis.  Thank you everyone who contributed to the conversation.  I mentioned in that post that everyone faces difficulties differently and that that list was from my perspective.  Well, after talking to my friend Sarah, you'll be surprised to see that 2 of my don'ts are also on my list of dos.

In order for this to make sense you need to know that my friend Sarah is a complete weirdo, otherwise known as an Extrovert.  She took an MBTI personality quiz just so I could be 100% accurate on my blog because that's what good friends do, waste time on the internet for someone else's blog.  Anyway, for reference, Sarah is an ESFJ and I am an INFP which means we are completely opposite except that we both favor Feeling over Thinking.  All that to say, we are so so different from each other that our running joke is to call each other "Weirdo" and ask "How are we friends?", but we are dear dear friends.  Anyhoo, Sarah told me today that she experiences "How are you?" and "I can't imagine" totally differently than what I described, and Sarah has faced some true hardship in her life.  So, to make things really confusing, here are the things you SHOULD say or do for someone facing a health crisis:


1.  Say "I can't imagine."

Confusing right?  I know.  I'm going to quote Sarah now (with her permission):

I know I say that one but I don't feel like I say it in a way that is looking to be comforted.  I say it in a "I have never gone through what you have been through so I can't say that I understand so I am not going to pretend I do."...I feel like it is annoying when someone acts like they understand your situation when they really don't.

I get what Sarah is saying here.  I don't think anyone who says this is purposefully trying to make the patient or caregiver they are talking to comfort them.  I know they are trying the exact opposite, and I stand corrected, because for some it really is a sentiment they appreciate hearing.  Sarah went on to say that when people expressed this sentiment to her it made her feel like she wasn't carrying her difficulties alone.  I guess a good policy is to reflect on what you know about the person who's facing the health crisis.  If you don't know them, my instinct is to just stick with "I'm sorry you're going through this".


2.  Ask "How are you?"

See above.  I really don't know exactly what to think of this.  It is so foreign to my personal instincts, but I do know Sarah and I know that if she were going through something difficult this would truly be an important way to love and support her.  If Sarah is this way, I'm sure there are many others like her who read my advice yesterday and were like "What the heck?".

I think that after reflecting on reasons you should or should not say "I can't imagine." and "How are you?" the conclusion I've come to is this:  if you know this person well, do what you think best fits their personality and what you know about them and that you aren't saying one of these things because it's what you would want or because it's what you want in that moment.  If your goal is to love that person, even if your foot ends up in your mouth, you are still doing the right thing.  So now, on to the rest of the list of things you should do:


3.  Pray

I know that, even if you are a believer, there are times when praying doesn't seem like enough.  There are times that "I'm praying for you." sounds trite and like something that people just say.  Please, please, please, if you do nothing else, pray for their healing, pray for guidance, pray for their peace of mind, pray for comfort.  Please pray.  I cannot overstate the power of your prayers.  I cannot overstate the tangible support and relief your prayers offer that no other gesture or statement can even touch.  If you are not a believer, when you tell someone you are thinking of them, that you are sending love and light or good vibes, or a myriad of other similar sentiments, please do not doubt the efficacy of these offerings.  Not only do these prayers and similar offerings lift up the recipient at that moment with their love, they truly have lasting effects.  There is no real way for me to convey it except to say that up until my cancer diagnosis my belief in the power of prayer was largely on blind faith, but now, having walked through that valley, "I was blind but now I see".  "The power of prayer" is not a catchy phrase, it is the most egregious understatement of all time.  In fact, prayers and well wishes and good intentions are the reason that "you can't imagine", because when you try to imagine it you are not factoring in the effects of the very real prayers and grace you will benefit from when you are in the thick of it.  It is beyond human understanding.  So please, if you do absolutely nothing else, pray pray pray and rest assured you have contributed the single most important thing you have.


4.  Reach Out

If you hear that someone you know is facing a crisis, even if you haven't spoken to them in a very long time, even if you only know each other through friends of friends, even if you've never actually met them in real life--if you feel moved to reach out to them to offer encouragement, just do it.  Don't worry that it will be weird, or awkward, or intruding.  I know that after all I've said about being private and introverted and concerned about burdening people this sounds counter-intuitive, but so many people reached out to me in big and little ways after many years and over many miles and every single time it was so uplifting.  Send a card, a note, a Facebook message, an email, a tweet, whatever.  Don't feel weird.  I felt so loved and supported and I was delighted every time someone reached out to me to say "I'm thinking of you, I'm praying for you, I'm here for you.".

Let's get practical, practical...

I should be banned from Google Images.  Moving on.

5.  Meals

Who doesn't love food?  The Terrorists.  No really, this is a 1/2 brainer.  I was going to say no brainer but there are a few things you should keep in mind to make this as easy and helpful as possible.  First of all, be sure you know of any dietary restrictions.  After you know what the family can and cannot eat, it's great to coordinate with others as much as possible.  When the enormity of our situation became apparent, some dear friends (including the previously mentioned Sarah), got together to plan amongst themselves how they could best serve our family.  The idea they came up with was genius.  Very often when a Mom has a baby, her friends and others around her will put together a calendar using a program like Care Calendar.  This is a great option, but when a family is facing something that will last more than a month or two, it can become really difficult to manage continuous, consistent help no matter how badly you want to.  If you have young kids and all of your friends do, which is our situation, no matter how much you'd like to think you could keep up the pace of providing meals for months on end, it is really difficult.  My super smart friends figured out that if everyone who wanted to contribute meals made a frozen meal or two and dropped them at the homes of a few "Meal Coordinators" who had deep freezers,  many more people could contribute consistently over the long term.  It eliminated the hassle of trying to get a meal ready on a certain day for a certain time when lets face it, it's hard to do that for your own family most of the time.  It made it possible that on a day when things were going well in one of my friends homes and things were clicking along they could double or triple the recipe they were already making and freeze it and voila, they fed our family for a few nights instead of just one. It eliminated the hassle of moms with young families having to pile everyone into the car during the crazy dinner hour.  It also offered more privacy to my family during a time when things were constantly disrupted.  Once a week one of my "Meal Coordinator" friends would email me and say "How many meals do you want this week?" and then would drop off what we needed.  That way, if Michael was home and wanted to cook (because he is amazing like that), he could do that and we could use the meals when it was best for us without worrying about anything going to waste.  What if you want to drop a fresh meal?  What a treat!  That is always welcome too.  

What if you're far away?  Well, one of the most humbling gestures I received was from a dear lady I used to cheer with in college who now lives far from me.  I was not always very kind to this loving soul.  It shames me to say that.  She got in touch with another dear friend who is still near me and arranged to have a whole Panera Bread lunch sent to me so that I wouldn't have to worry about getting lunch around for the kids one afternoon.  I can't begin to express what a fun, generous blessing this was to receive.  So if you're far away, send something!  We also received edible arrangements and grocery store gift cards and grocery bags full of staples and all were such blessings.  All of these things lightened our load and helped us to focus more on the task of getting better and to focus on each other rather than the practical aspects of feeding our family.

6.  Hire Someone To Do Housecleaning

I'm not very adept with PicMonkey yet.  PS, this is not really my house but all Moms know how fast this could happen.

The other amazing thing that Weirdo Sarah (xoxo) arranged for us was weekly housecleaning.  You read that right.  She collected money and arranged for a very adorable, very sweet, very efficient young lady to come to our house for 3 hours every week to clean up.  In those three hours she picked up, vacuumed and washed our downstairs floors (our entire downstairs is tile and hardwood), cleaned the downstairs 1/2 bath and the kids full bathroom upstairs, vacuumed the stairs and upstairs hallway, wiped down my kitchen cabinets and island bar stools.  If it had not been for her our house really would have looked like that picture up there.  Moms out there I know you feel me.  Even if you can't manage to get together funds for a weekly cleaning like this, even if it's just one time, it is such a blessing.  You don't need to hire a professional service, find a college or high school student.  Ask around at your church, your local Newman Center, or a local homeschool group.  This kind of help isn't always easy to accept, but it is vital, especially when a young family is facing a crisis.  

7.  Expect Nothing In Return

The kind of whirlwind that ensues when you or a loved one gets a life changing diagnosis is all consuming.  Sometimes you will send a note or an email or a gift and hear nothing.  I'm still haunted by times I've not responded to kindness in a timely manner.  In my case the reason for this is two fold, first, because when part of the time you are not capable of much of anything but the very bare minimum (at times the bare minimum being opening your eyes) and the rest of the time you're playing catch up and trying to make things slightly normal for the rest of your family a LOT falls through the cracks and you don't want it to be that way.  The other reason is that just like you don't know what to say and it all seems like not enough, there are no words this side of heaven that can adequately express this level of gratitude.  If I could lay prostrate on the ground kissing the feet of every person who has extended their love, generosity, and support to me and my family during this time and I could do it without it being The Most Awkward Thank You Of All Time I would do it and it would not come close to showing my most humble, passionate gratitude.  I want to do big things for every person who has loved us through this in ways big and small and yet there is nothing big enough.  It is paralyzing.  So, if you say something or do something and the recipient doesn't respond how you expected, have mercy.

Also, you may say something that is totally kind, right, loving, and perfectly suited to the persons needs and they might be having a tough day or just be overcome in that moment by what they are facing and they might cry, or be mad, or ignore you, and it will have nothing to do with you.  They are going through a difficult time and sometimes when faced with adversity we are very very strong, and sometimes we just lose our damn minds.  So please, have mercy.    

I hope this list is a bit helpful.  As I wrote this I realized that those of us who have faced a health crisis or other significant hardship and those of you who haven't are all in the same boat.  We each want to express feelings and intentions to the other that words cannot adequately communicate.  When someone faces an illness or other crisis we want to help so badly, we want it to go away, we can't stand the thought of someone facing it and it is scary to think it whatever it is could really happen so close to us.  I get it.  I remember.  In fact, even now, having walked through my own outlandish difficulty, I feel powerless to do what I really want to do, which is take it from them--to make it disappear in an instant.  We all want to know what the perfect thing is to say or do and I started this list with the intention of tying it all up with a bow for you, but I'm reminded now of why we all short circuit when we hear of another's suffering--it is because we are powerless to stop it and anything short of stopping it seems puny and insignificant.  Well, if you get nothing else from this list, please take away this:  you can't take it away, but your efforts no matter how imperfect, are not insignificant.  

Love is never insignificant.

These takes were not quick.  Back to you readers...what would you like to add?

What NOT To Say To A Person Experiencing A Health Crisis

Well readers, are you tired of me making a big deal about writing 7 posts in 7 days?  Sorry.

4 down 3 to go!  Go check out the other participants, there is so much great stuff out there...my feedly is bursting.

This post is brought to you by the number -10 which is what the wind chill was when I decided we were not driving to Occupational Therapy and coming home to work on this post instead.

This post is also brought to you by the letter K because one Mrs. Kendra Tierney at Catholic All Year has requested that I write a post about what NOT to say to someone with cancer.  I have a lot of thoughts about this, but I've held back a bit from sharing them because if you are a dear soul who has said one of these things to me I do not want to hurt your feelings because I just don't.  The thing about someone having cancer, or a miscarriage, or an accident, or some other health crisis is that first and foremost our human impulse is to DO something or SAY something, and that is a beautiful thing.  Almost everything I'm about to share is not offensive or even really wrong, it's just something that can be handled better when you have a clearer perspective.  So, if you read something here and are like "OMG I think that was ME, I think I said that!", let me put your mind at ease--I don't remember isolated incidents or even think people who say these things are anything other than kind loving people who mean well.  Some of these are things I've said to others myself.  Kendra asked in reference to talking to someone with cancer, but these really apply to anyone facing their own health crisis or the health crisis of a loved one.

The following list is in no particular order.  Please remember that different people respond to a health crisis like cancer differently, so this is from my individual perspective as a former(woohoo!) pregnant cancer patient.  Based on my experience you should NOT say:


1.  I Can't Imagine

You're right, you cannot imagine what this is like if you have not been through it and you know what?  I don't want you to.  Facing something like cancer treatment during a pregnancy, or cancer in a loved one, or whatever is so much worse than anything you can imagine but it is simultaneously not nearly as bad as it seems in a way that I can't explain.   There are also so many blessings that you also will not be able to conjure up when you play make believe about what this is like.  If you find yourself trying to imagine, or feeling like you should being trying to imagine please do us all a favor and stop.  Spend your time being grateful for your own health and healthy loved ones, do something for your family, stop yourself from complaining about something in your life that is small in the scheme of things, in short--be productive.  Be glad you are not in this situation and do something with that gratitude.  Please also ask yourself, how do you expect the sick person or sick person's family member to respond?  Think it through...because in polite society conversations are a two way street and when you say something like that the burden is now on the sick person to say something...but what can they really say?  Not much.  In fact, the burden is essentially now on the person facing the crisis to comfort you.  Now, that is something I realize has to do with how I'm wired.  When you say "I can't imagine" I hear it as "This is upsetting" and when someone is upset I want to comfort them.  But really, that's messed up.  The sick person should not really be doing the comforting.  So, really, stop trying to imagine and just be grateful it's not you and then do something productive with your gratitude.



2.  How Are You?

I know.  I know.  What else can you say?  Not that.  This goes back to that thought exercise where you ask yourself "How is this person supposed to respond"?  Whether or not you should say this probably varies with how close you are to the person in question.  If you are very close, it might be ok.  Everyone needs someone or a few someones that they can really confide in about their difficulties.  But if you are just acquaintances or just aren't sure?  Don't ask.  In polite society this question is a formality/nicety that is part of the social contract.  Part of that contract is that we understand that most of the time we don't really expect a person to answer honestly.  I know this one might cause a lot of upset but really, everyone knows someone who always answers with way too much information to this question and most of us strive to not be that person.  Furthermore, you likely have a good guess how we're doing...if we're going through chemo or nursing a family member through some kind of difficult treatment the short answer is "not great".  Because we know you know this, we now have to say the polite thing that is a lie, or we have to tell you stuff that feels like oversharing. You can probably guess pretty well how we feel even if you are following my advice and not trying to imagine.  It's not a secret that cancer treatment sucks.  What you're really trying to express when you ask "How are you?" is "I'm thinking of you" or "I care about you" or "I hope you're doing alright".  In fact the best thing to say "I hope things are going OK" or something along those lines.  That's what you really mean and it puts us in control of how much we share.  We can just respond with "thanks" or elaborate on what's going on with us if it seems right at the time.


3.  Why Didn't You Tell Me/Update Me/Call Me Back

Because I'm dealing with cancer and you're not.  Seriously.  Because something like cancer is all consuming and people want you to repeat the story over and over and over and over and it is exhausting.  I started this blog to help me process what I was/am going through but also so I could cut down on how many times Michael and I had to repeat our story.  I know you might feel left out and want to know the details, but the sick person or their caregiver is absolutely mired in the details and if they are trying to have a positive attitude they have to focus on that and not on repeating the litany of crap they can't escape.  Please cut the people who are ACTUALLY IN THE MIDDLE OF THE CRISIS SOME SLACK.*

*This is a good time to direct you to this excellent article about Ring Theory.  The only quibble I have with it is that I feel the the patient's spouse or direct caregiver should be in the center ring with the patient.


4a.  Are You Going To Try (Insert Alternative Therapy Here) Because Big Pharma Doesn't Want You To Know About It

and it's ugly stepchild:

4b.  This Probably Happened Because You Vaccinate/Eat Meat/Use That Shampoo/Talk On A Cell Phone/Live By Powerlines/Brush Your Teeth etc.

If I accomplish nothing else with this post it is my fervent prayer that:

Pardon Tina's french, but seriously?  Seriously.

Let me be clear.  Statements 4a and 4b are always WILDLY OFFENSIVE.

Before I go any further I'd better out myself to everyone who believes in the secret cabal of Science and Medical Types conspiring to KILL ALL THE PEOPLE that I am a paid shill for the pharmaceutical industry.  That's right.  They pay my bills and feed my children.  You see, my husband is a Medicinal Chemist for a pharmaceutical company that develops cancer drugs.  When you tell me that there is a miracle cure out there that the Evil Pharmaceutical Industry doesn't want me to know about you are defaming my husband and his coworkers.  So thank you helpful person with an internet connection you have put me in the position of defending my treatment plan and my spouse.  I'm a big girl so I'll deal with it, but the person I'm really concerned about is the person who is scared and overwhelmed and doesn't know you're full of bologna.  That person is going through one of the most terrifying, draining experiences of their lives and they are making decisions that are so so difficult.  They do not need you coming over and stirring the pot of confusion because a sidebar ad on your facebook feed sold you a book about Acai berries or whatever dragon fruit nonsense it is they are peddling out of the goodness of their hearts. You are not a doctor, you are not a scientist, you are not their doctor so ZIP IT.  Unless they explicitly ask your opinion and/or for your suggestions their treatment or the treatment their loved one is receiving is none of your business.  

The same goes for hypothesizing right to the patient or caregiver's face about what could have caused their suffering.  This is even more cruel than questioning their treatment.  What good can come from suggesting they have caused their illness or that it could have been prevented had they been as informed as you are?  In the cases where it could have been prevented you are a day late and a dollar short, but very often, there is nothing that could have been done and you have no business suggesting to a sick suffering person that it could.  It is just wrong.  Do not do this.

I have a separate post in the works at some point when I can do it charitably that will address attacks on science and scientists.  Just to make things fair I also have a post in the works that directly addresses the medical and scientific communities: *SPOILER ALERT* you are crap communicators and do yourselves and the public no favors with your crap communication.

So that's it, some guidelines for what not to say to people dealing with cancer, or really any other health crisis.

P.S.  If you do say one that is not 4a or 4b don't freak out, we all know you mean well and we've said them ourselves.

What about you dear readers?  If you've faced cancer or another medical crisis, what would like to suggest people NOT say?

An Open Letter To My Fellow Pro-Lifers On The Eve of the Anniversary of Roe Vs. Wade

I started this blog in part to be a witness to the fact that it is possible to be diagnosed and treated for cancer during pregnancy and have a successful outcome for both mother and child.  I am pro life, and any information that I believe would save a woman and child from abortion I view as vitally important and I feel a moral obligation to share it wherever and whenever I can.

BUT

Please, fellow pro lifers, do not use my story as a stick to beat people with in an argument.  Do not use my story as a rhetorical device to win a round of anecdotal gotcha.  Fellow pro lifers, tomorrow when you feel especially inspired to speak out in defense of life I'd like to suggest one thing:

 

Tomorrow is an emotional day.  It is hard not to feel compelled to shout from the rooftops the injustice that has been done and continues to be done in this country everyday, but I'm going to ask as a woman who has faced a crisis pregnancy that when you want to post something on facebook or jump in a combox tomorrow, stop.  Just stop, take a breath, and pray on it.  If you are not a believer meditate on it.  Think about what a woman who is considering abortion must be facing and say to yourself: There but for the grace of God, go I.  Then stop, take a breath, and pray, and meditate on it and say to yourself again: There but for the grace of God, go I. There are many times that I am sure I have the most brilliant point to add to a conversation that will enlighten all who hear it and if I pause to pray about it first that Holy Spirit puts a muzzle on me.  We always like to think when we're spouting off that it's Him at work, but when was the last time you asked Him before you spoke to see if you should speak at all?  It's not likely that you will have anything new to add to the discussion tomorrow.  I'd like to submit that what you say could possibly even do more harm than good.

I found out I was pregnant and soon to be diagnosed with cancer right before the anniversary of Roe vs Wade last year.  I went through the events of my diagnosis during 40 days for life.  One day during this time a facebook friend posted something about "If you are facing a crisis pregnancy have courage!".  In that moment my blood boiled.  Courage!  How dare she!  She has NO IDEA about courage! I just sat there and fumed and then I remembered...she does have an idea about courage, because she had her oldest child when she was just 17 years old and raised him as a single mother for years before she met her husband.  She is kind, compassionate, and walks the walk when it comes to providing true support for women facing crisis pregnancies.  I agreed with what she was saying, but I couldn't stand to hear it.  I am pro life, but suddenly many messages that used to sound totally compassionate and reasonable to me, messages I have spoken and typed myself with nothing but love in my heart, sounded insensitive and sometimes hurtful.

I received many kind, loving emails offering prayers to St. Gianna Molla on my behalf and encouraging me to do the same...but all I could think was...you guys...she's...DEAD.  It felt a bit like people were romanticizing what was for me REALITY.  These are dear, compassionate people, they were not romanticizing my situation, but I was truly having to contemplate and research and rehearse telling my 5 small children that their mother was dying, because at that time I didn't know, and that's not something you want to screw up.

If you are a mother, I want you to close your eyes right now and imagine gathering your children around you and telling them that you are going to die.  That you are going to leave them.  I want you to see their faces and the disbelief and fear and anguish that washes over them BECAUSE OF YOU.  Then I want you to imagine how it would sound to you to have someone who did not have to contemplate that possibility in a very real way telling you to have courage.  How would you receive that message?  Would it sound compassionate to you?  Imagine now that you aren't pro life.  Now how does that sound?  Fellow pro lifers, the people you are trying to reach are suffering through fear and anguish I pray you never face.  Your editorializing will not change their minds.  Your mercy might.  Please, remember, There but for the grace of God go I.  If you want to say something, stop, pray, There but for the grace of God, go I. 

In the minute or so after my second pregnancy test came up positive I considered having an abortion.  In that moment I considered having an abortion because the idea of telling my husband that I was pregnant when he was already reeling from the news that I likely had cancer was absolutely more than I could bear.  I considered having an abortion because I had 5 small children at home and I didn't know what my pregnancy would mean for my treatment and I didn't want to face the possibility of leaving them.  I considered having an abortion because there are people in our lives that I knew would take the news that I had cancer better than the news that I was pregnant again, even if it had been without the cancer.  I knew in that moment that only I knew truth of my situation and that if I wanted to keep it that way I could.  I could have easily made it just go away.  What I experienced that night, sitting in the stall of a grocery store bathroom, was anguish to an extreme that I believe I now understand viscerally what our Lord experienced in the Garden at Gethsemane when "He was in such agony and he prayed so fervently that His sweat became like drops of blood on the ground." (Luke 22:44)

I am a white, privileged woman living in the United States of America in the 21st century with a husband who is a good provider and who is deeply compassionate and committed to our family.  I have family and friends that I knew would support me every step of the way without fail.  If I was so scared facing my crisis pregnancy that I considered an abortion despite at lifetime of being fervently pro life, please reflect on the terror of a woman who is a member of any number of minorities, who is poor, who does not have anyone to support her materially or emotionally.

There, but for the grace of God, go I. 

Tomorrow, if you absolutely must do something, send money to Feminists for Life , or Abby Johnson's organization And Then There Were None, or to your local Pregnancy Center.

Tomorrow, if you are a believer, pray.  If you think that's not enough then that is absolutely where you should start.  What do you think your hastily chosen words can accomplish that God cannot?

Tomorrow, if you must say something, PLEASE REMEMBER, there but for the grace of God, go I.  Choose your words with the utmost of care and imagine what you would need most desperately if you were facing a crisis pregnancy.

It Would Be Dumb To Have A Bad Attitude, Part 1: The Facts

*I'm not a scientist, I'm just married to one.  Actually, a lot of this post was cut out because we had many conversations like this:  Me: Honey, would it be accurate, albeit very simplified to say X,Y, Z?  Him:  Well, I guess, but when you simplify it like that then it's only sort of accurate because Q, R, S and T, U, V and we just don't know X the way you're stating it.  Me:  But I just mean for regular people, would it be close enough?  Him:  I guess, but really blah blah blah.  And such and such just isn't reproducible at this time and... Me (talking over him now):  This is why people hate you sciencey people and hippies think you're liars.  Him: ...

As people hear about my diagnosis and I encounter them for the first time face to face, they often say: "You have such a great attitude!".   It is, of course, a compliment and an encouragement but it flummoxes me.  I mean, we're just out in public somewhere.  I'm not going to moan and weep and gnash my teeth from now until I'm cancer free.  Second, being positive has very little to do with any virtue on my part and more to do with how I was raised, the reality that I have a beautiful life, and the reality of what cancer actually is.  Do I tear up, do I have dark moments?  Oh yeah.  But honestly, living with cancer and not knowing it was much more difficult.  Now I know I don't suck at life. 

First and foremost though, seriously--what is the alternative?  Moping?  Complaining?  Wondering why me?  Waste.  Waste.  Waste.  Moping is useless and unfair to the people around me.  Complaining makes you more likely to mope.  And frankly, asking why me is the most destructive of all.  Why NOT me?  I've heard people say that before in response to their own challenges and it is the only proper response to this situation.  I am no more or less deserving of a pass from cancer than anyone else.  Really, deserving has nothing to do with anything.  

We like to find the "reasons" someone is sick.  We want to know what someone did, what they chose, what they eat, what they've been exposed to: so that we can convince ourselves that it won't happen to us.  It's a natural human impulse, but it is an impulse that shields us from the truth.  There are better and worse choices to make for your health, but in the end, anyone can develop cancer at any time.  No matter what anyone tells you.  The idea that you can follow a simple checklist and avoid it is inaccurate and I think, at least, emotionally dangerous.   

In The Emperor of All Maladies: A Biography of Cancer, Siddhartha Mukherjee writes: "Cancer genes came from within the human genome...Cancer was intrinsically “loaded” in our genome, awaiting activation. We were destined to carry this fatal burden in our genes...”.  Well then, what a waste to say why me when the answer is simply because I'm a human being.  Why should I be exempt from the realities of my own biology?  It is easy to forget that we are all programmed with the potential for cancer.  There is so much focus on what is and is not a carcinogen and on whether or not we carry specific genes for specific cancers, that we often forget that we all carry the code for cancer in our bodies all the time.  Many people don't even realize this very important and inescapable fact.  Carcinogens play a role, sure, but it is nowhere near as linear and causal a relationship as most believe.  

I will never know why I have cancer at age 33 in a way that would be specific enough to be comforting to most people.  But really, I know all I need to know.  I have cancer because it is part of the human reality.  It's almost like a built in self destruct feature, mine just activated before it should.  Oh come on Nella, that's not even really true.  Biology is biology and just because things happen at a less than ideal time doesn't mean they shouldn't.  I just don't have to like it.  Evolution took a look around myself and decided, we don't need anymore of your kind around here.  Nothing personal.  Thankfully modern medicine has managed for a way that I can tell evolution to take a hike.  At least for now.  I got an easy cancer and my chances of survival are about 80%, so I can't help but think evolution isn't totally sure it wants to get rid of me anyway.  Hehe, stuff it evolution!

Anyhoo, what a waste to get mad that I am subject to the same biological realities as every other human.  Having a positive attitude can only help me be one of the 80% who survive.

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.

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.

Am I a Hypochondriac?

Maybe, if you are an anxiety all-star like me, you have asked yourself at some point "How would I know if I had cancer?".  Maybe you've imagined what it would be like to figure something like that out.  Well, this is how it went for me.

After Julia was born, I'm not sure exactly when, I started itching.  Really bad.  So bad that as a grown-arse woman I could not control scratching.  It started on my lower legs and eventually affected my entire body.  I itched so badly that I became covered in extreme scratches, sores, and scabs.  It is not cute.  I have ruined a lot of sheets and clothes, and often wake my husband up at night because I'm scratching so badly in my sleep.  If my skin is dry, if it is hot and humid out, if I sweat, or if I'm wearing a bra or anything with a waist band or textured fabric of any kind it is excruciating.  Nothing makes it better, but those things make it much worse.  When I'm at home I wear loose jersey pajama or yoga pants and my husband's biggest oldest t-shirts--just the kind of ensemble that makes a man want to rush home to his lady.  He is a saint.  If we have to go somewhere, I often get the kids all dressed and buckled in the car and then run back inside to get dressed to minimize the time I have to have clothes against my skin.

At first I thought it might be some kind of hormonal thing.  Hormones can really mess a girl up and I've been stewing in a cocktail of pregnancy/postpartum/nursing hormones for years.  At the beginning I also thought it might be a result of, ahem, substandard postpartum hygiene.  When you have 4 kids ages 5 and under (which is what I had when this started) showering falls to the bottom of page 1000 of your to do list, at least for me.  Finally, I thought it might be a side effect of the anti-depressant I was taking because I had the PPD.  Each of these was pretty much eliminated over time as a suspect.  Every time the doctor sent me for blood work it came back clean as a whistle.  I tried every cream and lotion you can imagine, I tried elimination diets and added more probiotics.  I had been using vinegar, baking soda, and other non-toxic cleaners for years but eventually I eliminated all commercial hygiene products from my routine as well.  I washed my hair with baking soda and vinegar, brushed my teeth with baking soda, and used a coconut oil and baking soda paste as deodorant.  My husband rolled his eyes but it all worked well even if it didn't improve my itching.

I was straight up starting to lose it.  The stress of being constantly uncomfortable and often in pain, of having to choose clothes to minimize the discomfort but not draw attention to myself, and of being ashamed of the appearance of my skin was wearing me down.  This all continued through another pregnancy (Adam) and I actually spent most of the night before his birth waking up to scratch and put on lotion.  After Adam was born,  I redoubled my medical efforts and saw an immunologist, dermatologist, and a homeopath.  I've been put on steroids, anti-histamines, and homeopathic remedies.  Nothing has helped.  NO. THING.

All this time I would research obsessively.  I would pursue any lead.  One silly, crazy, completely off the wall possibility kept popping up in my search:  Lymphoma.  LOLS!  That's not me!  That's for other people on TV.  Besides, I had none of the other symptoms.  I put it out of my mind, but it would keep popping up, and that thought spiral went something like this:  "Of course I'm fatigued, I have 5 kids ages 7 and under and I don't have any enlarged lymph nodes and that is for other people on TV, and stop even thinking that you narcissistic hypochondriac nut job."  This kind of thing continued on and off over the course of the 3 years after Julia's birth.

Finally, on December 28th, 2012, I went to the chiropractor and as I was about to leave she said, "Are you coming down with something? Because I feel a swollen gland on your neck."  It would be a long time between that moment and my formal diagnosis, but in that moment, I knew.  I just knew deep down that I was not coming down with something.  I knew I had cancer.