This is a guest post done by my sister Ash. She is starting her own “blogging journey” and will be sharing here as well as on her own personal Facebook page. I lived this as a sister- and it was terrifying. I am eager to read this journey from her point of view.
To link directly to Ash’s blog click HERE
Blog- Scarred for Life
Entry 3- Recovery~Diagnosis~Treatment
Good Morning Sunshine” are the first words I heard upon waking up from surgery in the elevator heading to recovery…I remember only being able to keep my eyes open for seconds at a time…I remember being in so much pain and not being able to talk to tell anyone….the nurses however were great…every time they would see me start to wake up they would come and hit my morphine and I’d be out like light..
I didn’t realize till later that I laid there for nearly 5 hours after surgery…It had been a long day for my mother and John in the waiting room..They let my mom in to see me and then she went back home to be with the girls..John came in after and I remember them making him leaving because he kept asking me questions and they didn’t want me to talk…
I finally got to go upstairs to my room…John was there and I had awesome nurses..At this point I was wide awake and able to talk a little bit..I was starving and wanted to eat..chicken broth and jello was all I was allowed and I promptly threw it all up the minute it hit my stomach…They told me I should get up and walk around..I never realized how much my neck muscles did until that day…I could barely roll over in bed and they wanted me to walk up and down the halls, really?? I did what they said and walked to the vending machine so John could get a snack and started to pass out..It was scary..I remember having to sit down and then dry heaving on the floor…I was embarrassed and John had to carry me back to my room..
My night’s sleep sucked, they put those boots on my feet that filled up with air and every time they did I’d wake up….I couldn’t roll over or get comfortable… John slept in the chair next to my bed…The next morning was miserable..but I was going home!! I will never forget John actually complaining about having a stiff neck from sleeping in that chair….are you kidding me!!!…YOU have a stiff neck???
I had a surprise visit from the surgeon before being discharged…He wanted to tell me in person that he did in fact leave the left half of my thyroid gland inside me. The lump was looked at in the operating room by a pathologist and looked like it was just a goiter..it would be sent out for further testing…He said with this half of my thyroid being left inside my body I had a much better chance at not having to be on medication for the rest of my life…He acted like he did me a huge favor….so I was grateful..
Driving home was excruciating….I swear John hit every bump possible…I arrived home and my couch had been pulled out and made into a bed where I would stay so I could watch t.v….I was pretty much out of it..on a lot of pain medication…I couldn’t get up by myself and could barely eat….I don’t remember how many days it was until I saw the girls…when I did finally get to see them it was painful emotionally and physically….I was to sore to hold Morgan and every time Sarah would jump, hug or try to snuggle me, it hurt..I wasn’t able to fully care for them by myself for about a week and a half..
Aside from recovering and trying to get better so I could have the kids home…Christmas was coming!! And between having a baby and having surgery, I hadn’t done any shopping at all…I remember saying screw it and driving to walmart..my mom yelling at me because they had told me not to drive for 2 weeks..oh well…I remember standing in the toy aisle in so much pain, fighting back the tears and then leaving the toy filled cart there and going home…I was finally able to convince John we needed to go to the mall…We didn’t have a lot of money so I asked Sarah if she could have anything what would it be?? She wanted a giant winnie the pooh…I was on a mission and found her one at the disney store..Now I couldn’t wait until christmas morning!
Christmas was great!! Every year my parents would put on an open house with tons of food and tons of people…I would be able to dress the girls up and I think it was the first time I put on real clothes since having Morgan..I remember wearing a turtle neck because I didn’t want anyone to see my neck and ask about it…After all I was heading to the Doctors the very next day and it would all be behind me..so let’s enjoy this night with friends and family…
My follow up appointment was the day after Christmas..it was also the first time I’d be taking both kids out with me..my mom came too…My first follow up was with the endocrinologist.. my follow up with the surgeon was a few days later…I was thankful I’d made it through this and I was looking forward to putting this behind me and being able to get back into a routine with the girls…We sat in the room and waited for the doctor….she appeared with a folder in her hand and asked me if I’d seen the surgeon yet? Nope I hadn’t…”I just pulled your pathology results off the computer” She said…wonderful..lay it on me….And then she said it….It was cancer…
I remember panicking and immediately crying..My mom shushing me because she needed to hear what this lady was saying..Sarah asking me what was wrong…I wanted to grab that folder and rip it up…I wanted this doctor to go check it again…obviously she’d gotten it wrong…the surgeon told me it looked okay….go fucking check again!!!
She wasn’t wrong… there was no mistake…the lump was minimally invasive follicular carcinoma…words I will never forget…but it was easily treatable and according to her…if your going to have cancer it’s the best one to have…Are you serious?? Do you want to take my place on this table right now??.. Was I supposed to feel lucky??…Like I had hit the mother fucking cancer lottery??..
She reminded us that the surgeon had left the other half of my thyroid inside and told me she would immediately schedule a second surgery..WHAT??? There’s noway I could do that again…there’s noway this is really happening…I needed time to digest this..I needed to go home…
I don’t remember the drive home..I don’t remember the kids being in the back seat…but I remember my mom being ridiculously calm and positive when all I wanted to do was swear at anyone that looked at me and punch them in the face…we drove to her house and I called john…it was the first time I’d said it out loud…It’s cancer…
My follow up with the surgeon was here…John came with me and I had all the bandages and steri strips removed..the scar was there and it was still numb..I remember touching it and getting sick to my stomach…The surgeon went over the pathology report….like I hadn’t heard it loud and clear the first time…I told him the endocrinologist wanted another surgery and my guess was he would be the one to do it….He didn’t like this and took offense right away…there was no need to question his work…he got it all…he told me “I’m good at what I do”… He did me a favor and left that side in, so I could have a more normal future…didn’t I remember if I was his wife that’s what he’d do??..I remember thinking.. Do you hate your fucking wife??
It became a battle between the surgeon and the endocrinologist and I was caught in the middle…I decided to get a second opinion and see the most recommended doctor at Mass general in Boston…
John and I went and sat in his office…he was one of those guys that was sooo smart he came off as odd…he had a bunch of interns sitting in with us…the more the merrier!!…they discussed me like I wasn’t even in the room and tossed some mumbo jumbo back and fourth and then he finally said (and I’m not kidding when I type this) “as much as I’d love to slice your neck open..there’s no need to”and he recommended I have radioactive iodine treatment.
To me it was a better alternative to having another surgery..I called my endocrinologist and asked if she was okay with this new plan and could she set it up…Yes she was…I scheduled lots of appointments and had tons of blood work and scans…Then learned that I would be radioactive?? I would need to be in isolation??? My stomach sank when they told me I would have to stay away from the kids for another 7 days…it was to dangerous for them to be around me…so once again I packed them up and my mom and sister took over…
They had to special order this radioactive stuff and I had to be there when is was delivered…it was late at night and we drove to the hospital…the nuclear medicine room was in the basement and John had to wait outside…they led me into what looked like a vault …. a guy with a suit and gloves on took a lead canister out of the counter and opened it….he told me to hold out my hand…out of this big thing came two pills…he gave me some water and told me to swallow them….let me get this straight, your in here in a suit and gloves and won’t even touch these pills and you want me to eat them??? Thats exactly what they wanted me to do and in doing this it would kill any remaining thyroid I had left.
I went home…all was fine…I didn’t feel radioactive..I didn’t look radioactive…I couldn’t go out in public…I couldn’t be within 3 feet of John for more than 10 minutes…I ate with plasticware and paper plates and had to throw them away outside…I had to flush the toilet 3 times when I went to the bathroom…I couldn’t spit my toothpaste in the sink it had to be spit in the toilet and flushed 3 times…I couldn’t chew gum…wash all clothes separately and wash them twice…and god forbid if I threw up I had to call nuclear medicine for a clean up.. and in case I died nuclear medicine would have to be called to come get my body!!
After a very looong week of basically being bored to death…I was ready to get my kids and celebrate!! I had to go back to the hospital for more bloodwork and another scan…I remember being giddy at the thought this was over..I was happy and told myself it was a small price to pay for my health and the kids would never remember not being with me during those weeks…after all they were being spoiled rotten by their Meme and Auntie…
I got my iv inserted and waited to be called…they called me in and let John stand behind the glass and watch…I laid on the table and they turned on the machine..the lights when all around and they slid me in..telling me when to breathe and when to hold my breath…when it was over I don’t remember what they said..if anything at all…I just couldn’t wait to get out of there..we went home feeling relieved and I would return to the endocrinologist and start discussing meds…big deal so I have to take a pill everyday..to me it seemed that easy…
When I returned for my follow up…..once again this bitch with the folder told me devastating news..
My scan showed a piece of working thyroid still in there….I would have to go through another round of the radio active iodine…now not only was I lucky enough to get THIS kind of cancer….I was lucky enough to have what they were calling…the thyroid of steel..
|Morgan the reindeer
|Sarah & Morgan