Sleeping Sickness

Nights are the hardest...

My mind is always racing... A million and two thoughts

What should I do? What should I do?

The kids are finally in bed and I'm alone. Left alone.  Completely alone.

I'm still adjusting to being alone.

I often complain of sleepless nights...

 Kids crawling into my bed, 

needing me to comfort them. 

The truth is, I need them as much, if not more, 

than they need me...

Nights are when I feel like the biggest failure.

Like I'm not good enough, smart enough, I haven't tried hard enough. 

Nights are when my mind becomes my enemy and picks apart my flaws one by one...

When I question myself, my parenting, my friendships...

I just wish my brain would rest; quit over analyzing everything...

I wish I could accept me for me, embrace the flaws

I'm so fucking hard on myself.  

I'd give anything to not feel so empty inside. 

Say something....

It's been so long since I've written a blog post, and I've come quite a ways in this journey of life since my last update. I'm not entirely sure where to begin, I just feel compelled to share my story.  

I have so many thoughts in my head that need sorted, and perhaps if I get them out, I can start to acknowledge my feelings and move forward.

New beginnings. The reinvention of me. 

Life has been cruelly unfair. It's been one thing after another for years now. Instead of bitching and ranting, however, it's time for me to figure out how to make some changes. I've been dealt a shit hand, but I have to make the best of it. I have to continue moving forward.  It's time. 

It's time to say goodbye to the life I once knew and welcome my new life with open arms. While I will never stop grieving the enormous loss of my husband and the father to my children, it's time for us to move forward.  

Say something, I'm giving up on you...

I've carried so much guilt for three and a half years now. So many "what if scenarios", I've replayed that night over in my head a million times and I'll never understand why I did the things I did.  Why I didn't go with my gut.  Why I listened to him instead. I blamed myself for not being able to save his life. For not being able to bring my husband home safely to our children that night.

I'll be the one if you want me to...

The weight of this guilt and blame and self-hate has been eating me alive all this time. I feel as though the old me died that night, but the new me has not yet emerged. I've been stuck somewhere inbetween life and a nightmare for the past 40 months.  Meanwhile, life around me has gone on.  We've moved , twice.  I've started a job as a pharmacy technician that I mostly love.  Relationships with in-laws have forever changed. My children have grown up so much since that day.  Somehow though in all of this, I've managed to completely lose myself.  Depression, anxiety, and anger have taken over and truthfully I lost a huge part of my identity that night.

Anywhere I would have followed you....

I spent my entire adult life with my husband. And when I lost him unexpectedly when I was just 31, I wasn't sure how to exist without him. For so many years I was "Stephanie, Luk's wife", or "Stephanie, mother", and I'm struggling to figure out who I am outside of those roles. 

Say something I'm giving up on you....

So I've been stuck in the same place all this time.  I've tried therapy. I've been on meds. I've had a series of meaningless relationships... I've tried just about anything that I thought would make me feel better in the short term. One day, the answer came to me, and it should have been obvious all along- I need to work on me. I need to address the guilt, acknowledge the fact that odds are, no matter how I initially reacted, the end result would still be the same,  start putting my life back together and start truly LIVING AGAIN. 

And I...am feeling so small

It was over my head... I know nothing at all....

And I...will stumble and fall

I'm still learning to love.... Just starting to crawl...

I've wasted so much time. So much of my life has been spent being sad, anxious, and angry. So much energy spent on these emotions instead of enjoying my family, focusing on the positives, and the beauty of life. One foot in front of the other. Tiny changes. I'm working on me. I deserve to feel better. My children deserve the amazing mother that I know I can be. My friends deserve the right to spend time with the real me, instead of the empty shell that I've become.

Say something I'm giving up on you...

I'm sorry that I couldn't get to you...

I will always miss my husband.  I will always miss the life we had together. It was by no means a perfect life, but it was ours.  More importantly, I will always grieve  the loss for my children. They've been robbed of the chance of growing up with a dad, and Jayden and Lia will only know their dad from the pictures and memories we share daily. I will always miss who I used to be and how life was, but I can no longer sit and dwell on things I cannot change. I can I longer live in the past. 

And I....will swallow my pride...

You're the one that I love... And I'm saying goodbye...

I can't let the loss of his life be the end of my story.  Although it is difficult to venture into the unknown, it's a path I must take in order to find myself.  I have so many hopes and dreams, and maybe if I'm lucky, some will be come realities. One can only hope.  Here's to new beginnings, remembering the past but no longer living in it,  and finding peace and happiness within! 

Completely neglected

 I need to blog again.

So many confusing thoughts in my head.  Writing down my thoughts has always been so therapeutic for me in the past. I'm not entirely sure why I stopped; just that I did. Now it's time to start up again.

I don't know where to start. At this point, I'm sure everyone knows my story.

I'm doing ok.

Ok. That's a lie.  My life is a train wreck.  I wouldn't have imagined this life for me, ever.  Not in a million years.  All I've ever wished for in life was health, happiness, and in two years, I've been robbed of both.  My coping skills sort of suck now.  My anxiety is sky high the majority of the time..  every little twinge in my neck, and I think to myself..."it's back.".

I'm not really living so much as going through the motions.  My life completely fell apart last February, when I unexpectedly lost my husband, Larry.  I've been stuck on pause since that night.  Except for the fact that two weeks later, I found myself unexpectedly pregnant with our fifth child.  This year has been a whirlwind of emotions, heartache and downright denial.  I still cannot comprehend...that he's gone, really.  And then I look into the dark brown eyes of our newest little girl, and there he is.  It's so bittersweet, really.  I see so much of him in her, and then my heart just breaks a little bit more thinking about what my kids have missed out on... what they've lost.  I'm an adult, and I'm coping terribly.  I cannot fathom what goes through their heads that they are afraid to discuss with me.

Life sucks. It's impossible to ever get comfortable, because every time I do, shit falls apart.  First cancer, then losing him.  I'm afraid to find out what's next.

My neck has been achy. I think I feel enlarged lymph nodes near my incision.  That's irrational, most likely, as my blood work in November was clean.  What if, what if, what if?

All over the map tonight.  This is why I can't sleep. My brain never stops... and once it finally does, either a 6 month old wakes to nurse, or a 3 year old wakes screaming. It never ends.

I try so hard to focus on the positives, and always get stuck in the gloom and doom.  I need to find away to be ALIVE again. Not just letting life slip by.

~Stephanie

YOU'RE FIRED!

Today I made the 360 mile round trip drive for my one month follow up post TT with the endocrinologist.

Immediately he was aggravated by the fact that my infant son came with me to the appointment. I have no one to watch him during the day, and on a long drive such as that, I wanted my husband along for moral support. So the appointment in general started off on the wrong foot.

He mentioned my calcium levels were low, but didn't discuss details, just jumped right into the RAI discussion.

This may sound silly to some, but I cannot swallow large pills.  I have NEVER been able to. I don't know why, I just can't. So for me, it was important to know the size of the RAI capsule. To him, this was an irrelevant question. I tried to explain to him that I cannot even swallow a Tylenol without breaking it in half and that I didn't think I would be able to swallow the I131 capsule and instead would like the liquid form.  I also attempted to mention that I had not fully weaned my son yet, and was completely brushed off.

He has already refused to refill my synthroid as he wants me to have RAI in 4-6 weeks at the most, as soon as I become hypo and do two weeks on LID.  I know from my research, I need to be completely done breastfeeding for 6-8 weeks prior to RAI, but he ignored me.

When I re-iterated the fact that I can't swallow pills he acted fed up and told me he didn't know what he could do for me then, and that I needed to seek treatment elsewhere. He then said "you didn't have to drive all this way for this appointment, you could have just done a teleconference".  That was just the icing on the cake, considering this was my 6th trip to Marquette in two months, they knew exactly how far I was driving and this has never been mentioned prior to now.

SO yes. I'm firing my endocrinologist.

I used to live near a large hospital that is world renowned for their cancer care. 8 months ago, I moved 350 miles away to a tiny island in Michigan's upper peninsula.  The care up here..is lacking, to say the least.  Honestly? I should have done more research, but my care options were pretty limited because I had a medicaid HMO.  So rather than try to fight the insurance company, I saw the only ENT and Endocrinologist on the plan and had my thyroid removed immediately.

I feel a lot of distrust towards the world renowned hospital downstate, as they have monitored my thyroid nodules for 3 years, told me I was fine, even as recent as October of 2010.  If I hadn't moved up here and if my new family pcp didn't want to take a closer look herself, I'd be none the wiser while the cancer continued to spread...

So although I distrust the particular clinic I was dealing with.. I've put in a request for a consultation with the cancer center.. because I'm hoping that I will receive better care there than what I am currently receiving.

I'm not sure how I'm going to swing the transportation costs, as the trip will double in length..but what can you do?...

Nothing can ever be simple..

Anyone have some synthroid I can borrow?

So I have cancer.

Yesterday's appointment was more a formality than anything else.  I anticipated the pathology report would just come back a confirmation.  Have I mentioned I'm not an optimistic person in the least?

What threw me a bit, however, is that the cancer has metastisized into my lymph nodes.  I was not prepared to hear that.  I knew it was a possibility, but I didn't think it would be a possibility for ME, if that makes any sense? Not that I find myself better or less deserving than anyone else, I just figured if the nodule didn't appear cancerous on the ultrasound, and if the biopsy only found a few cells than maybe I'd get off scott free with just a total thyroidectomy and be done.

No such luck.

My surgeon removed 10 lymph nodes, and one of the ten was positive for papillary thyroid cancer.  Unfortunately only the PA was available during yesterday's appointment so I am waiting some clarification from my surgeon as to what all exactly this report means.  I understand the jest of it, but there are a few parts I have questions on.  He is in surgery again today, so hopefully I'll hear from him later or tomorrow.

The PA said because the cancer has spread, I do have to have the RAI ablation.  Which means, I need to wean Jayden pretty much immediately.  I'm disappointed, and sad for my son, as well as myself, that our nursing time is going to be cut short.  I've decided to let him continue to nurse as regular for the next week, most likely until I return to work, and then start weaning him.  I have no real game plan in mind.. it's going to be hard and there will be a lot of tears and hurt feelings and confusion involved.  I'm not looking forward to and am trying to cherish the little time we have left.

Admittedly, even though I was expecting to hear I had cancer, I am a bit overwhelmed and full of anxiety at the moment.  I know it could be so much worse but right now, honestly? I'm just feeling a bit sorry for myself.

I have to go back to Marquette April 15th to meet with the endocrinologist and figure out the full treatment plan I suppose.  The PA also mentioned an oncologist but I guess I'll find out more on whether or not that is necessary whenever I can discuss the pathology report with my surgeon.

It's a lot to take in.  Just trying to breath and not freak out.

On the positive end of things, I got the lab results back from my calcium levels yesterday, and while they are low, they are on the low end of NORMAL range.  So hopefully this means my parathyroid glands are coming out of their surgical comas and starting to function again.  I'm so over TUMS already.

I had a total thyroidectomy on 3/17/10.

The days that lead up to the procedure were stressful and full of panic for me.  We took the kids on what was supposed to be a mini vacation to Wisconsin Dells, for a little R&R before everything got a bit chaotic.  As far as I know (unless they have been eavesdropping), they don't really know the extent of what is going on.  (Hell, I don't either at this point..).  Anyhow, my stress, combined with a long drive, and their usual crabbiness amongst themselves made our fun trip not as fun as it should have been.  Thats not to say that I didn't enjoy it, but it had the potential to be so much better.  I was supposed to take a bunch of pictures and honestly, my mood was so blah.. the entire time.  I didn't even go on a single water slide, just followed Jayden around to wherever he felt like exploring.  And I love water slides, if that says anything..  we got a few shots, but hardly enough to account for a three day vacation.

The drive back to Michigan was long, especially through northern Wisconsin.  We passed miles and miles of what appeared to be abandoned train cars.  I meant to take down the name of the town so I could google it to see if there was any information- literally over 200 cars just sitting.  I was sidetracked however.  My mind was going in circles by that point.

We checked into our hotel and pretty much went straight to bed.  I had to be to the hospital the following morning @ 11:30 am.  I woke up early and I'm not going to lie, I was downright bitchy.  I was so afraid, of so many things. Mainly, my biggest fear of general anesthesia is not waking up.  I just had this impending feeling of doom, like this was going to be the last time I kissed my kids sort of feeling.  I was choked up all morning and snappy at the same time.  I bought a recordable book the day before, just in case my voice was altered or impaired during the surgery.  I know I'm a pessimest, but I wanted my kids to have something, even if it sounds a bit silly.  I also thought maybe it would help Jayden get through the first night we've ever been a part.  I was so emotional when recording that book.. I had to kick everyone out of the hotel room because I couldn't stop crying.  Everything changes once you have kids.  They are my everything, and I breathe because of them, and I couldn't help but imagine their life without me in it, and it was sad and scary.  I really need to work on being more optimistic.

The hospital was literally around the corner from our hotel.  I told Larry it looked like a shopping mall when we pulled it.  The lobby area was beautiful, rustic setting with a fireplace.  I found the check in area, and while holding Jayden I told the lady at the desk I was checking in.  I was a little taken aback when she looked at me and asked if I was in labor.

First and foremost, if a woman is in labor, she's usually beat you to the punch line on that one, and it's not a question that needs to be asked.  At least in my case, whenever I was in labor, I was very loud and clear about what was currently going on.  Secondly, who calmly holds thier one year old son and sits down at the desk in front of you, while digging through her purse for her medical cards and ID if she is in labor?!!?  I mean yea I know I was stress eating for two weeks prior, but I don't think I put on enough weight to look pregnant for CRYING OUT LOUD.

Once she finally got her end of things straightened out, I had to go to the lab and then to pre-op.  I was fortunate that they let my family hang out with me.  By the time I had to put on my gown and such I was balling my eyes out.  The kids and Larry hung out for a bit, and then when they started getting antsy, we took advantage of the free childcare program the hospital offered.  It allowed him to be by my side without interruption and we were able to speak more freely to the nurses and anesthesiologist about health history and things that the kids didn't necessarily know about or need to know about.  As usual, there were issues with getting an IV started on me (I have super tiny veins) and the anesthesiologist had to do it because she needed to use a smaller IV catheter.  She was such a nice lady, and did her best at trying to keep me calm.  Ultimately though my nerves got the best of me and I ended up getting sedated a bit before my procedure.  I know Larry went and got the kids and I kissed them all and told them I loved them but he said I was zoning out well before they wheeled me off.  All I remember after that is them pushing another full syringe of sedative into the IV and the oxygen mask, and then everything is sort of blurry from that point forward.

I remember hearing the anesthesiologist's voice in the recovery area asking how I felt and I remember saying I felt sick and her giving me Zofran.  I vaguely remember my kids and Larry coming to see me in my room that night after the surgery (which lasted about 4 hours), and Ashia saying that I looked dead.  I know I had my blood drawn a few times in between consciousness and around 11:30 that night I finally got out of bed to use the restroom and needed pain medication.  I didn't really come to though, until 5 am the following morning, and then I was super nauseous, most likely the result of a lot of pain medication on an extremely empty stomach.  Thankfully the nurses were able to give me Zofran which worked immediately.

At around 7:00 am my surgeon came in to check on me and removed the drain from my neck, which was probably one of the most disgusting things I've ever felt.  He told me one side of my thyroid resembled a cluster of grapes and he needed to literally peel the parathyroid gland(s?) out of it, and the other had a nodule the size of a golf ball.  He also told me that my calcium levels were dropping due to the shock of the surgery and we went over the medications I would be taking and my post operative discharge instructions.

I ordered a whole bunch of food for breakfast, even though my throat was extremely sore and it hurt to swallow, thinking that I would be able to get something down.  As soon as it arrived, another wave of nausea hit and all that I was able to accomplish was two bites of a banana and a bite of muffin before just hanging my head to the side. Damn Lortab.  I had to wait a little bit for my husband and kids to check out of the hotel room and I had the nurse check to see if I could get another dose of Zofran before I was actually discharged. Thankfully she was able to get it cleared, because we had a 3.5 hour drive ahead of us.

It felt like forever but I finally saw my husband and kids walking down the hall. I ended up having Larry send the kids back to the childcare while we got all of our paperwork in order and worked on getting my prescriptions filled.  That place was an absolute godsend because it kept them occupied while we needed to take care of important matters...

The drive home was uneventful and long.  I slept pretty much the rest of Friday once we got home and almost all of Saturday.  Saturday the low calcium levels really started to affect me.  My lips went numb many times, I had tingles in my arms and legs and my jaw would lock up if I tried to chew.  It was excruciating when that happened and I could feel the muscle spasms all the way in my ear drums.  I'm pretty sure I took the maximum recommended dosage for Tums that day, but it was all I could do to keep comfortable. My whole body felt like it was buzzing, but not in a good way. I just felt..weird.

Each day of my recovery, I've gotten progressively better.  I haven't taken any narcotics for pain since Friday afternoon on our drive home.  I've just been taken extra strength tylenol, about once every 12 hours.  The pain isn't bad, more annoying than anything.  I've not really kept track at how much calcium I've had to take the past few days, but I know that each day it seems to be less and less and I'm not nearly as symptomatic as I was the first two days.  I'm hoping this means my parathyroid glands are starting to function normally on their own.  Overall, i feel as 'ok' as I can, I suppose.  I still have the steritape over the incision, but I can tell my neck is bruised underneath.  The incision itself is about 4" long right at the base of my neck. I'm pretty freaked out to see what it looks like without the tape covering it, honestly...

Tomorrow is the moment of truth.  We have to go back to the ENT office for my post operative appointment to have the steritape removed and to go over the pathology report.  I'm nervous.  I kept telling myself all week that I was prepared for this, we already have an idea of how this is going to go, but frankly I'm not.

I'm scared.

I expect it to be cancer.  Tomorrow is just a formality, a confirmation of what we already know, if you will.  I'm hoping that I'm wrong, but realistically? The biopsy results were as clear as they could be without the thyroid sitting directly under the pathologist's microscope.  I'm hoping that although it is the "big c", that we receive some positive news, like it hasn't spread to my lymph nodes, and that their initial diagnosis of papillary thyroid cancer is correct, because honestly, it's the best case scenario.

I've armed myself with information, so I kind of know what to expect tomorrow.  I feel that knowledge is power.  Some people have told me not to look into all of this stuff, just listen to the doctors, but I can't. I have to know, so I can prepare myself. I don't like being blindsided.  I am as prepared as I can possibly be for my appointment tomorrow, and I just want to get it over with.  I need to know where I stand.

But honestly? I still haven't caught my breath yet, since the wind was knocked out of me a few weeks back.  I'm a little tired of hearing that this is "the best kind of cancer" to have.  It's still cancer.  Cancer may be a word, not necessarily a sentence, but it is still a very scary word to deal with, especially when you have four kids at home who rely on their mom to be well enough to take care of them.

I'm scared, and I can't sleep because I have too much on my mind.  I've found some great resources on the web and I just want to keep reading and reading and part of me thinks that maybe by doing so, it will lessen the blow of the news, or maybe I can displace myself, just for a little while, and pretend this is happening to someone else, and not me.

So it's been a few days.  I've been trying to process all of this and in a very short amount of time.

I went to see my regular PCP on Thursday and we discussed a little more in depth my probable treatment.  My medical chart now officially says I have thyroid cancer, although it won't be formally diagnosed until after the pathologist has a chunk of my thyroid in front of him or her under the microscope.  It's a lot to take in and I'm trying to keep my anxiety in check but so far, I'm failing pretty miserably.

I found out from my doctor that RAI treatment is pretty much standard after a thyroid cancer diagnosis.  This was something I hadn't really looked into before, and only briefly discussed with my endocrinologist after the biopsy was performed and he was urging me to just have my thyroid removed regardless of the results.  I didn't ask enough questions (because at the time, I wasn't concerned at all that this could have turned cancerous, as I had a benign biopsy three years ago...), and I greatly misunderstood what this meant for my nursing relationship with my son.

If I have to have the RAI treatment, I need to stop nursing immediately.  I thought I could simply take a break, pump and dump and continue on.  Unfortunately, this is not the case.  From what I have read, you need to discontinue nursing 6-8 weeks prior to the treatment, and because you are pretty much a glow stick for awhile, you cannot continue to nurse as the radioactive iodine remains in your system for several months.

It may sound silly, considering everything else, that I am devastated by this. I spent all of Thursday night crying over this.  I am just so sad, for my son, for myself, that there is this strong possibility that we will be weaning suddenly in the next week or so.  My heart just aches, because I'm not prepared mentally or emotionally to give this up, and Jayden is very much a comfort nurser and in no way is he ready to wean.  I never knew I would feel this strongly about breastfeeding, to be completely honest.  I am trying to cherish each nursing session we have now, because I know in my gut that it's most likely coming to an end sooner than I had anticipated.

I have a lot to do today.  I'm off work now, and tomorrow we leave for Wisconsin for 3 nights, before heading to Ishpeming, where my surgery is taking place.  I'm caught in between wanting to hurry up and get this all over and done with, to wishing time would just stand still so things can remain as they are for awhile longer.

I'm still holding out hope that maybe the pathology report from the biopsy was wrong, but if I listen to my gut, I'm pretty sure the next pathology report will be a confirmation.