Been a long time- been a rough time


Well hello all!  I’m sorry it’s been a while since my last post.  I am alive (which shocked me a bit when I woke up from the surgery, to be completely honest!).

Surgery went “well”– 600g (1.32lb) were removed from my neck during the radically converted neck dissection.  I am now missing half of a salivary gland, a muscle, a nerve, my internal jugular vein, 30+ lymph nodes, and my neck fat.  Pairing with my new losses is also a loss of sensation from my scar up to my chin/jaw, and an extremely sensitive painful spot on the right side of my chest.  My right shoulder is also extremely offended by the operation and is excruciatingly painful.  My neck swelling has finally gone down a bit– although it’s not yet 100% normal.
Anyway, the day of the surgery went pretty much like this:  we (H. and I) got up at 5am, showered, dressed, did some last minute packing and boarded a bus to the hospital.  We arrived a few minutes before 7am, when I was to be expected.  In Germany, one shows up at the station/unit at which one will be treated after the OP, when one arrives at the hospital.  A bit concerning was that when I arrived, all of the beds were full, and a man was on a gurney in the hallway with a room divider acting as the walls to his “room”.  I was reassured that patients would be released before I got out of surgery, and went on my merry way into the multipurpose room to change into my “disposable underwear”, surgery leggings, and gown all of which were provided to me by the hospital.
Another two friends also arrived at the hospital, making my waiting group 3.  They joined me on my OP-gurney and we talked for about an hour, when we began to ask why I hadn’t been taken down to the OR.  We then saw that my surgeon was wandering around doing last minute rounds.  He approached me and briefed us on what his plan was, at which point I gave my own 2 cents and made it clear that my health comes before cosmetics and that he by all means had my affirmation to cut as much as he needed to.  I then received a Xanax and was wheeled down to the pre-OR rooms in which I was greeted by anesthesiologists and nurses who opened my gown, put my on the operating table, and gave me my drugs.  They placed a line in my hand, which made me fuss a bit because those always hurt the most.  But soon they had given me the drugs to put me under and I began to feel my diaphragm and lungs stopping.  That’s my cut off point.  Next thing I remember is being on a gurney more than likely still in the OR, and waking up with a tube down my throat.  Being a medical student, this really scared me shitless because I couldn’t quite decipher between whether I was still in the OR or whether I was in the ICU and of course my first reaction was, why can’t I breathe on my own?.  Tube was pulled and the next thing I remember is me waking up in the recovery room, being asked if I had pain, and saying that I did have quite a bit of pain, but that I didn’t want to be knocked out again.  They then gave me a bit of morphine and about a half hour later I was asking for some water, a bathroom, and to see my friends.  Back in my more conscious state, I was able to look at the clock on the wall and realize that I had been wheeled down to surgery at 9:30am and it was then 1:30pm.  Another minor shock- the operation was supposed to be between 1.5-3 hours.  Mine was four?!
About an hour and a half after first waking up “for good” in the recovery room, I was wheeled into my room on the ENT floor.  First thing to be noticed were two drainage tubes and a large bandage across my neck as for me not to be able to see the scar and of course for sterility purposes.  My neck swelling was immense.

As expected, I had lost quite a bit of blood during the operation and wasn’t feeling too amazing when I returned to my room.  The nurses had to play with some medications for me until I regained a comfortable operating state.  From then on, it was just a lot of pain, lack of movement range, nausea, and swelling.

I’m 3 weeks out as of this past Friday and consider myself to be doing pretty well, all things considered.  Emotionally, the whole new cancer junk has taken a bit of a toll on me.  I don’t want to be sick and I don’t want to think of myself as being sick.  But it is so immensely hard not to when you are.  Initially, after the operation, I had to get used to my scar.  Something I found to be harder than I thought it would be.  I am so young and I have a gash across my neck, from ear to ear.  Everyone has an idea of how they look because they’ve seen themselves in the mirror so often.  And this image of oneself changes of course, as one ages, but one sees it along the way- so the subtle changes over the years become less noticeable unless compared with an older photo.  For me, I went from a young woman with no “battle wounds” to a young woman with a small scar across her neck, indicative of a thyroid operation, but not screaming cancer, and then to a young woman with a scar reaching ear to ear screaming and bellowing that I had a health problem.  To those in the medical field it’s a clear sign of head or neck cancer, to those not in the field, it raises uncertainty, a sense of unattractiveness, and many crude questions.
I initially wore a scarf wherever I went, although it was uncomfortable for the material to rub against my skin, but now I have stopped.  I now see myself with my scar when I envision myself.  My scar is a part of me- and it’s not meant to be hidden.  But at the same time, for fuck’s sake, I am so young, and I don’t always want to be so different.

Ok, well perhaps I am a bit frustrated.  But I really just want to be treated as a normal person,  go back to the things that normal people do, and feel what normal people feel.

I have another radioactive iodine treatment on Tuesday, for which I will need to check into a hospital again for a few days, and that’s about it that’s new.

I’ll try to do another update while I’m in the hospital this week, but until then, some progress update pictures:

from April 30th 2010, pre-neck dissection

Laying on the gurney waiting to be taken off to surgery.

just wheeled into my room 1/3

just wheeled into my room 2/3

just wheeled into my room 3/3

day after the surgery 1/3

me and my drains- one day after the surgery 2/3

day after surgery 3/3

four days post-op 1/2

four days post-op

two weeks post-op

two weeks and five days post-op

two weeks and five days post-op, front view

two weeks and five days post-op

two weeks and five days post-op

7 Responses to “Been a long time- been a rough time”

  1. Well the obvious good news is that thyroid cancer is not particularly aggressive, it is highly treatable and you survived the dissection surgery.

    I am an oral cancer survivor, squamous cell tonsil primary, with some cervical lymphnoed involvement (stage III). Treated at Vanderbilt–no surgery–infussion chemo–IMRT radiotherapy. Treatment concluded 1/08 so now about 2.5 years down the road.

    I am curious at to your being treated in Germany, I presume other circumstances dictated your being there. You mention your a medical school student; what year?? Also, you mention your friends accompanying you, but no mention of your parents or other family members present.

    It appears that you are concerned with the appearance of the post surgical scare. Considering your age, most understandable. Are you experiencing muscle atrophy, loss of strength or neurological deficits?

    What symptoms did you experience that ultimately led you to medical care?

    Lee Rebalko
    Parkland, Fl

    • Hey Lee– this surgery was actually my second surgery- I have advanced poorly differentiated thyroid cancer. The thought initially was just a T3 tumor- but as things began to grow in my neck again later and didn’t absorb iodine, it became pretty clear that this cancer was a hell of a lot more aggressive and nasty than originally thought. I still have some iodine-absorbing cells in my body (hence the radioactive iodine) but also the de-differentiated ones.

      Indeed I lived in Germany pre-cancer diagnosis. I am in my 3rd year of medical studies here in Heidelberg.
      The decision not to have my family around me was solely mine. I didn’t want any extra stress, and my family is also more on a need to know basis about my disease– especially given the pond between us.

      As for the physical effect of the surgery- as they removed my SCM, I have a lot of loss of strength and range of movement on my right side. Atrophy hasn’t begun yet- but I plan on starting physical therapy as soon as I’m out of the hospital for my radiation.

      And my original symptoms were my Hashimoto’s Thyroiditis– after that began and my TSH was around 170, two nodules on my thyroid were discovered– both “cold”.
      I pushed for about 4 years to have my thyroid removed, seeing as it didn’t function, I didn’t see the downside to the operation. Finally the doctors agreed and removed it, low and behold a T3 tumor.
      And what symptoms led you to seek medical care?

  2. 3 Sarah

    Thanks for such an inspirational site. I found the photos really helpful and I think you are beautiful. X

  3. 5 Aamir

    Pretty decollete

  1. 1 3 likes
  2. 2 YinOva Center

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: