“Did they have to take out your HEART?!?!?!?!?”

I have a giant T shaped scar from the bottom of my neck (the top of the T) down between my breasts. And it’s red. And it’s swollen and wide. (I don’t scar well – stupid Keloids) It also goes up behind one ear, but that part has healed more nicely.

One day when it was still fresh and even scarrier looking – like Frankenstein – a little girl in an “Old Navy” store asked what happened to me. I told her I got really really sick and had to have surgery and the doctor fixed me up. She stared at me in horror for a long long time and then said slowly “Did they have to take out your HEART!?!?!?!” Which embarrassed her mom so much I could see her literally trying to sink into the floor. I said “Nope. I still have my heart – and I’m all better now.” And gave her my winning-est smile.

Then I went to my car and cried.

The 5th anniversary of my chest surgery came and went this month. I honestly avoided thinking about it at least consciously. Apparently my body didn’t. I have been sick most of the month – pain, migraines, sleeplessness, restlessness, mood issues.

As I sit here writing my mind wants to run. Run away from the pain. Run away from the memories. This is how I know I must at least attempt to put something into words. Get it out of my body.

I found out I had thyroid cancer in December 2006. Just after my son was born. He was about a week old when they told me “we think it’s cancer”, and scheduled me for biopsies. I didn’t need a biopsy, though – I knew what it was. I’d been trying to tell the doctors something was wrong for at least 3 years, and I had a ping pong sized lymph node that wouldn’t go away. And the ultrasound looked scary as all get out.

The first surgery was scheduled on my son’s one month birthday. As I was being put under I thought of him – specifically the way he pursed his lips when he yawned, and his big gorgeous eyes. And his laugh. He laughed the first day he was on this earth. I got through that surgery ok, was off my thyroid meds being prepared to have my “special” radiation – a pill we swallow. I ended up having to take my baby to my parent’s house – leaving my husband to be alone worrying about us, away from his new son. The doctor I had then kept putting off my radiation. I kept getting sicker. I couldn’t lift my baby. I couldn’t help take care of him. My mom or sister in law or whomever was there helping would put him on my lap, or lay him on the couch or bed next to me and I would love him. Mostly they did the feedings, changings, bathings, getting up at nights… The precious newborn things. I desperately tried to spend moments with my son between sleeping and hurting and being sick. I just kept my eye on the prize. Get that pill in me to kill the last cells of cancer, get back home, and get on with our lives. When the doctor finally decided I was ready for my radiation we came back home. I think we were gone for over 2 months. My mom and husband took care of the baby. I tried to shower, put on clothes, lift my arms. I couldn’t even put my hair in a pony tail.

By some crazy act of fate the doctor I would fire immediately following my second surgery ordered a test not normally used before RAI (radiation iodine). Hey, every once in a while even a moron gets one right. He was told by the nuc med department that they had started trying to use PET/CT scans the day before the radiation to make sure everything looked ok. Not only was this helping to treat cases better, but also giving a baseline PET scan to compare later (the PET scan can sometimes pick up more if you are off your meds in these cases.)

My RAI scheduled for the next day, my mom drug me to the PET scan. Looking back now, I should have known something was wrong. The tech was a young man – only in his early 20’s, and he squeezed my hand and told me good luck as I left.

The nuclear medicine department called me to cancel the radiation iodine. Before my doctor got around to calling me.

I panicked, calling my doctor. He told me there were more tumors. I needed to see a cardiothoracic surgeon right away. My favorite doctor in the whole world got me in to see one of the best in the state. Right away.

As we stared at the tumors between my lungs and heart on the PET/CT images I went numb. I swear to you I have no idea what happened after that. I know he told me we had to go in through the sternum – no chance of going down behind the collar bone or even from the back. The tumors were too close to major arteries and nerves. He told me I would go onto my thyroid medicine – to have surgery in this state (being extremely hypothyroid to prepare for the radiation) would kill me.

I cried in the car. I sat in the back by my son. Luckily my mom is made of metal and got us home safely. I’m sure she cried there though. I held my son swearing I wouldn’t orphan him at such a young age. I screamed inside myself at the world. I had waited so long to have this – a family, happiness, my own little corner of the universe, some sanity. What kind of world was this to make me go through all this crap now? After I had picked up the pieces of a once crazy life and made my own way and found some happiness? Where was the fairness, the justice, the kindness, the mercy?

Guess what? Sometimes there isn’t any.

I ended up going home with my mom again. I couldn’t care for my son and get the rest I needed, and even though my parents both worked, we had cousins, my grandma, aunts, and church friends who could relieve me parts of the day. It helped a lot. But again, I was afraid, lost, and away from my husband. I slept little, I ate what people made me, I sat and watched tv. I couldn’t read because my eyes had swollen and collected extra fluid. I tried to play on the floor or couch with my son. I went to Walmart and used one of those little ride on carts to find little toys and some new spring clothes for the baby. I hadn’t even been able to do any of the normal “buying clothes” mom stuff since before I had been on bedrest for the pregnancy.

On April 12, 2007 I had my second thyroid cancer surgery.

I’m not gonna lie. I was scared out of my gourd. But I tried to be all matter of fact and “it’s gotta be done” about it. The night before the surgery I’m sure my mother, father and husband wanted to kill me. I tried. I really did. You can’t imagine all the deep breathing and meditating I did. I let my dad have a man from their church come over to pray over me. (this was for their benefit – my parents and brothers’ – I knew it would help them feel better about the surgery) My husband pulled out some Russian prayer card I’d never seen. We aren’t religious. We don’t pray. But in situations like this people revert to what comforts them. I didn’t sleep that night. I was so exhausted I could barely walk. I had just gotten my TSH up to a “livable” level. It wasn’t perfect and no where close to what we are normally kept at. But I could have surgery.

Every other surgery I have ever had they gave me “versed” before they wheeled me down the hall. They call it the happy juice. It helps so you don’t have to see the operating room – well you see it, but you don’t remember it later, and you are so relaxed it’s no big deal. This surgeon believed in “the least necessary” route. Which is good. In theory. He put a Picc Line in my chest so I didn’t have to mess with IV’s, since I have a tendency to blow them out. He didn’t let them give me a catheter to try to avoid bladder infection. So, no Versed. They let my husband stay with me until they wheeled me down that long long hallway. He held my hand and in his quiet way comforted me. Then I am told he went out into the waiting room and curled up on a couch pretending to sleep. My son was almost 5 months by now. We had a family friend watch him for the day so he wasn’t just sitting around the hospital. (first – the germs – eww. Second – my family needed to breathe.)

I was scared to death of that hallway. The operating room was cold and big and lonely and bright. And cold. The doctor held my hand and talked gently to me as they put me to sleep. He told me he’d talk to me soon, not to worry, I’d see my son in a couple hours. I thought about my son’s little pursed lip yawns.

I woke up in the Intensive Care Unit in so much pain I couldn’t breathe. I passed back out.

You know when they ask you “on a scale of 1-10, 10 being the worst pain you’ve ever had, how bad is your pain”? Well, I have had nurses compare 10 to child birth, kidney stones, one fool said “imagine if your arm was ripped off in an accident”… like someone can really imagine that. This pain was not on any scale. I think the pain meds they gave me weren’t strong enough – we had to move up to the next few “levels” of meds, and combine them with other things. But I also didn’t expect the pain. Had I been expecting it I might have done better. My doctor told me several weeks later that if he told people about the pain, they’d rather die from a heart condition, and he wouldn’t have a chance to heal them. I don’t mean to sound like he didn’t talk to me about it. He said “it’s gonna hurt. bad.” But there is no way to prepare for this or even imagine it, I don’t think.

They cut my sternum open straight down the middle  from the notch in the collar bones to just below the 4th rib. They pulled the ribs open. They took out 9 tumors which, it turns out, were wrapped around the nerve bundle, major arteries, and my trachea. It was “a mess” in there. Then they closed me up, wired my sternum shut, and sewed it back together. Writing this hurts. Physically.

I was unable to ride in a car without weeping for weeks. Breathing hurt, coughing made me pass out a few times. I ended up needing a phentanyl patch to just get through the day for almost a month and a half. I couldn’t lay down for 2 weeks. We used every cushion including couch cushions in the house to get me a few precious hours of sleep by propping me up into a mostly sitting position that didn’t strain my neck and back.

I don’t even remember a lot about that time, except the pain. I remember my mom taking me across town to see the surgeon for follow ups. I was in so much pain I was crying and we saw a person pushing a stroller. With a dog in it. An expensive jog stroller. I started laughing and it hurt so bad I vomited. My doctor showed me how to pull the suture out that were getting infected. My body “over heals” – and I “spit out” suture. It’s actually called a suture abscess. It’s an infection and the suture has to be pulled out. He took a few out while we were there and showed me how to do any more that happened. Sent me home with a little surgical kit with a scissors and tweezers. I felt pretty cool. I ended up pulling out and clipping 4 more at home over the next week. I told him if I knew how much pain I was going to be in I wouldn’t have had the surgery. He told me “I know. That’s why we let you find out for yourself.”

(ps, that nurse that said “imagine if your arm was ripped off in an accident…” This was my response to him: “Well, I can’t really imagine that. But why don’t YOU imagine someone splitting open your chest, digging around in it, wiring it back up, and waking you up with your pain meds not working. That’s MY 10. This pain is a 6.”)

I couldn’t lift my son – I couldn’t do anything but eat. My mom helped me dress and wash and get from the couch to the bed. I had my radiation iodine 4 weeks later, so she took my son to her house at that point – for 7 days I missed my baby. You can’t be around people for a week after you ingest that stuff. You can kill their thyroids if you are, especially children. My husband slept in the other bedroom, used the other bathroom, ate by himself and came into my room (4 ft away) for an hour at nights. I still wish I had “isolated” somewhere else because I still worry about the effects all that had on him and my son in the end. I was very sick for that week after radiation. I slept and watched TV and slept.

My parents brought my son home to me on the morning of my first Mother’s day. I was still sick and tired and weak and in pain, but determined to stay home with my little family. We did alright after that. Very slowly and very carefully. The house was a wreck, I was a wreck, my husband brought home dinners and did the laundry at night even though he left for work at 4 am and didn’t get home until after 9 usually. I couldn’t do anything except take care of the physical demands of my son and I. And sometimes not even I.

It has been 5 years this month.

I still hurt every single day in my chest. Some days it’s a dull ache – just the background noise of my life. Some days it is extreme stabbing pain. Nothing we have done has helped this. We tried medicines – one anti-inflamatory helped some but gave me an ulcer. PT, massage, yoga, meditation. We even went back in on my 4th cancer surgery and tried to “rewire” my sternum – it never healed properly and I begged the surgeon to just try to fix it. It took me going to see him 3 times and the doctor who was doing the neck surgery calling him to convince him to even try. I knew the surgery would hurt, but not like the first time. They didn’t need to go spreading open my ribs for hours. Just scrape the bones, and re-wire. We even put in a cool bionic piece to help close it called the Sternal Talon. http://www.klsmartinusa.com/Sternal_Talon.672.0.html I do believe that helped for a while, but it just didn’t quite do the trick, and at some point the pain started coming back more. I feel like the Talon slipped some. But it did help the pain in the initial healing period and for several months after.

I think the trauma from this surgery has been something I have suppressed. I mean, it was a serious surgery with lots of possibility of complication. I was in the most extreme pain I can ever imagine and I lived through it. I have pain every single day because of it. My life will never ever be the same. I can’t cut vegetables without causing more extreme pain. I can’t lift my son. I can’t lift a bag of potatoes. I can’t push  a grocery cart. Vacuuming is torture. Driving more than an hour can really aggravate it. Holding my son’s hand as we walk, him tugging on me or pulling against me can bring tears to my eyes. As he has gotten older and bigger, he causes pain too. He will snuggle too hard against me, or pull on me, or jump into me. For a long time he was used to being careful with mommy, and he was smaller, and now since it’s just part of his life, I think he has become a little more careless. And I hate to tell him he is hurting me. So I usually don’t.

This surgery changed my life in ways I can’t even describe.

I have tried to think of the positive aspects. I know that everything that happens in life has negatives and positives to it.

I have found strength I never knew I could have. I know that 10 years ago I couldn’t have gone through this. I have found the ability to AT TIMES live in the moment. To just be. To not be DOING anything. No one can live like this every minute, but I have found a way to do it more often than I used to. I have learned the art of accepting and even asking for help. I have learned the art of saying no to people, because I just can’t do some things some times. I have learned that limitations are ok. They are part of life and they are not good or bad. They just are.

I have learned that there is ALWAYS something worse than what you are going through right now. Always. I have met some amazing people along this journey. Truly amazing people who have touched my life for the better forever. I have learned how to show my son how to be strong. Not physically strong. He doesn’t understand that I actually am being physically strong every day when I tell him I can’t do certain things. Not yet. But he is learning that even with pain there can be life – and an enjoyment of life. Even with illness or sadness or mourning there can be quality and meaning in your day, week, month, moment. He is learning that the true strength in everyone comes not from the outside, but from the inside. He is learning that moments are important. That being healthy is important, and how to best try to keep his body healthy. He is learning good stress techniques, I hope.

I have become closer to my family and my husband. I spent time that I would have never been able to spend with my parents, and my son did too. He is very close to them because of it. I spent time with my nephews and my sister in law when she helped me. I have learned that time is fleeting and good quality time even more so, and so I try to see my brothers, my sisters in law, my nieces and nephews, my parents, my grandma, my cousins, my friends, and all the rest of the people I love as much as I can. I have learned that once it’s gone, time can’t be recovered. I have learned to enjoy those precious moments.

I have learned to take care of myself first, because if the captain goes down, the whole ship does too. If I have a migraine, or pain, if my body is telling me to slow down, I have to make myself do just that. To not slow down becomes disastrous.

This isn’t the end of the story of my cancer journey. I had 2 more surgeries, 2 more years of testing and such. And right now we are “watching” some activity that may or may not be something we need to address later on. But it was a major chapter in it, and since this month seems to have taken a toll on me I decided perhaps I needed to address it.

Thank you for listening.

If anyone runs across this post some day and it scares the crap out of them because they have thyroid cancer, please know that my case is not normal. It’s been very very far from normal. Don’t let my stories scare you.

And do your best to kick that cancer’s ass.

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10 thoughts on ““Did they have to take out your HEART?!?!?!?!?”

  1. Ashley…I am so overcome by your story and never really had any idea what you went through, only the minimum. Earlier tonight, I came across the pic you sent me long ago of your “area” and once again I was reminded of your struggle, although, in our tightly knit group, we all know each other’s daily struggles…we share our lives. I know what time it is at your house when I wake. I’m happy to see you pop on at any time of the day or night. I love you, my friend, now and always. ❤

  2. Pingback: Take another little piece of my heart now, baby | livingwithanukedbody

  3. Pingback: Thyroid Cancer Awareness « fishjello

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