goi-ter n. 1. disease of the thyroid gland that often causes a large swelling of the neck. 2. the swelling. from the french goitre meaning gutter throat.
That says it all, huh? Just from the sound of it - it can't be good. Like the other gross words mucus and phlegm - what the word describes is nuthin' pretty.
If you have to picture it, think of that lady in the Danny DeVito/ Billy Crystal movie 'Throw Momma from the Train" - I think she had a goiter. And, it wasn't her worst feature either.
Which brings me to another point, how does a parent know that their little Brooke or Ashley is going to be pretty? Have you ever honestly seen an ugly or homely girl named Brooke or Ashley? How about a beautiful girl named Gladys or Gertrude? But that discussion is for another day.
So the story goes like this......
I have a lot of symptoms of this that and the other thing....self diagnose ad nauseaum ( the internet friend or foe? yet another post for a later date). Finally, because my husband begs me, I go to a Primary Care Physician (whom shall be addressed as PCP from herein) . White coat hypertension abounds. Blood pressure surely increases as soon as the appoinment is made. PCP listens, but doesn't really believe me - tingling and numbness in lower leg, right side of face/chin/ cheek, and right arm,wrist and fingers. At my behest, PCP sends me to have MRI of brain, lumbar spine (lower back) and cervical spine (neck and upper back). He says, and get this - he actually used these words....."you want to find mulitple sclerosis, so go have the scans done'. My husband David was in the room - I always bring back up 'cuz I may be a hypochondriac, but I am not stupid - and as such, since it was my dime (crappy insurance that I pay a ton for, am I better off being an illegal? Yet another post)- I had the scans done.
October '07- First set of MRI's done. No signs of M.S. , but PCP calls to say studies show signs of spinal stenosis and slight disc bulge blah blah blah. That means a narrowing of the openings in which the spinal cord and nerves come out of and could explain the tingling in arm and leg, but do not explain right sided symptoms. Oh well. "Oh yeah, and by the way (sound of shuffling papers in the background as if PCP is looking up my name as he tells me) there is a small cyst in your brain and we need to rule out a tumor and you have small nodules on your thyroid gland"
SCCCRRREEEAAAACCCHHHHH - if only the blog world was onomatopoeic you would
know that that was the sound of heavy gauge needle scratching the surface of an old
vinyl LP - which at that point was all I heard.
November '07 - go back to MRI center for a more in depth brain scan. In the interim, PCP sends me to a neurologist whom I shall call Dr. Nice lady but no doctor (Dr. NLBND) for a Nerve test. She actually looks up stuff in a book written in like 1941 and photocopies it for my diagnosis. According to Dr. NLBND, I shouldn't carry an attache case and swing it. Nor should I wring out my laundry. Neither of these tasks I do, have done, or plan to do. Thanks, Dr. NLBND, and here's your $347.00 and I blow off follow up visit with her.
PCP sends me to neurosurgeon , whom I shall call Dr. Of All the Nice Looking One's In Your Office, Your Old (Dr. OATNLOIYOYO). He makes me bend and stretch, looks at the MRI's and asks if I have ever eaten raw pork 'cuz this kind of thing mirrors a parasite found in people in under developed countries who eat raw pork. Says, see me in a few months. I promptly pay him his $200.00 consultation fee and blow that off to.
I call PCP and ask what is up with all these lame ass Dr's - he tells me my insurance company doesn't pay good neuro guys in our area. Great.
Now onto the thyroid nodules. PCP has an ultrasound tech in his office. Go for the ultrasound and at least 5 nolules are found in right thyroid lobe. Go home and google thyroid nodules. Fairly large ones, too. You can actually see them sticking out of my neck. Why didn't PCP 'palpate' (or feel) them upon physical exam , I don't know. Swollen glands, too. Talk to my parents (who had just had to cancel their trip out to CA for Thanksgiving because my wonderful dad was too sick to travel - more on that later too.) and my sister who tells me she has nodules too! I go through the next step in testing which is a radioactive uptake study. You take a pill, and then have an X-Ray. The tests shows whether or not the nodules are functioning or not. Hot means yes, they are functioning, Cold means no they are not. Waiting for PCP to call me back on that .
December '07 - First week of the month, I get a call from PCP who says he got the Radioactive Uptake Study results back and everything seems to be working fine. Follow up with him in a few months...whew! I go about my business getting ready for the holidays, and going to Florida to see my parents (maybe for the last time as my dad is in steadily declining health) and keep a happy face for my kids. On or about the 23rd of December, PCP calls me back and says he just got the final final results from uptake study and I do indeed have a cold nodule.
PCP- all the while shuffling papers " Ah, yes, you need to see a general surgeon about those
nodules. I can recommend someone right here in town"
Me- "what, almost 3 weeks ago you told me you got the results back and everything was fine. "
PCP- " well, I just got the final , final report back."
Me- "What is the date on the report, you called me December 8th"
PCP - and get this ...he ACTUALLY says this to me " well, the way insurance works, the more
hands that touch the report , the more the labs can bill insurance, and this one went to
friggin' Pakistan to be read"
I am so friggin' pissed off right now I could feel the blood churning.... "Okay, PCP, who are you gonna send me to now?"
He sends me to Dr. Measles. Just Dr. Measles, I can't make up anything funnier than that. I make an appointment for January 2nd or 3rd when we get back from Florida. I go see Dr. Measles, and this guy I like a lot. The first thing he did was PUT DOWN THE FRIGGIN' PAPERS and just listened to me. He looked me sqaure in the eye and asked what brought me to these incidental findings in the first place. At this point, I once again explained that I was just trying to find out why I am always numb and tingly on my right side -which I still am, BTW - Dr. Measles asked about family history and we talked for about an hour. Just talked. I make an appt. for a Fine Needle Aspiration of the nodules (which, by the by, had grown a few mm's since first ultrasound ) That study is a biopsy for which 4 results can be drawn.
1) clearly benign
2) clearly cancerous
3) indeterminate (or we didn't get enough cells to tell)
4) suspicious of cancer
January '08 The test is scheduled for Jan. 10. I bring my hubby who is a good foil when it comes to me and needles and poking and general doctor stuff. I mean , the guy came to like EVERY Gyn. appt I've ever had....he's the best. We go in and take the test. The needle biopsy is Ultrasound guided, and the tech was the one who , on Xmas eve of '06 , came to the E.R. and found my gallstones. (oh yes, yet another post for another day) We do the thing and half way through it the cell phone rings. I give my husband crap for answering the call and we go through the rest of this. As we leave the place, he tells me my dad passed away just a few minutes ago. I collapse and wail and am uncontrollable for a few minutes. Hubby holds me . I apologize for giving aforementioned crap for answering the phone. We get it together and go about getting ready for the next week or so of sadness (oh yes, you betcha - another post for another time).
We get back to California and Dr. Measles calls me and tells me that the FNA biopsy came back as suspicious of Follicular Thyroid Cancer and the only way to tell is to have one lobe removed and send it out to a lab for blah,blah,blah,blah.....Jeezes H Christ. Another surgery. - In the last 13 months, this will be my third surgery and the third organ I will have removed from my precious and no so well kept body.
Surgery is sheduled and performed on February 8th. I asked Dr. Measles what the complications and risks were on this type of thing. Even though I had googled all there is to know about Follicular Thryoid Cancer treatment, risk and what not , and even though he had already told me about the risks, I wanted to know again. "The biggest risk in this is the patient developing a hematoma after the surgery." he says to hubby and I while I am in pre-op dressed in blue from cap to gown to booties. I say "How many times have you had a patient develop a hematoma in all of your years of doing this ?" 'None." says he assuredly. He goes on to tell me that you have to like the finesse of this kind of surgery as opposed to opening a gut and moving junk around to take out an organ. This is one bloody region of the body with very small and intricate vessels"- he likes this. Okay. that is good to know. Good to know that your surgeon isn't grossed out as much as you are by the mere mention of the word 'goiter'. (bet you were wondering when I would bring up the word again, right?)
Well- I get through the first surgery (first , you say?) and all seems fine in world. Honestly all I remember is being woken -rather shaken awake forcibly, and being yelled at to open my eyes and open my mouth ...I am scared , I say and Measles takes my hand. Later on that evening, when I wake up, and have the friggin' worst sore throat and little mittens on my teeth , and have to pee sumpin' fierce.....(thank you lone orderly man who shoved the little bedpan under my waaay exposed nether regions) I am told that I developed a hematoma and had to go back in for a second surgery to suture the bleeder. If if never happens, it seems to happen to me. I am freezing cold and nurse covers up my 1/2 naked body with a warm blanket. They are wonderful caregivers at Thousand Oaks Surgical Hospital.....again , it's my dime, so why not stay at a nice place? Hubby is there - after several hours and many freak outs, I am sure...as this is the second time in 3 surgeries that things went awry that 'never' happen......to tell me I am okay and he loves me and I drift in and out of consciousness.
Next morning, Dr. Supple - Measle's office partner (and no, I have no cute name for him either, but am laughingly reminded of the old Three Stooges 'Dewey, Cheatum and Howe' routine) comes in and tells me that there are only two kinds of doctors that hematomas happen to. Those it has happened to, and those it will happen to. I sort of smile (because BTW he is cute and his hands are as his name implies) and drift in and out of morphine induced sleep for the next day or so.
I get home from all this two days later.....waiting for test results. Can't sleep lying down because of the massive amounts of phlegm and mucus in my throat from the trauma. Bruised from nipples to chin without benefit of cosmetic surgery....golf ball sized lump in the throat - Now that's a goiter!!!
Go to see Dr. Measles on the 14th - Valentine's Day (big whoop de doo here) and what would have been my dad's 72nd birthday....to find that lab results came back and I have a follicular adenoma and Hurthle cell changes suggestive of cancer. Not good pathology report. Hurthle Cell Cancer is not good. And, Measles tells me, only 3% of Follicular cancer is this kind....and when the cells are present, it almost always means cancer. Need to have the other lobe taken out and biopsied, too. It could come back benign.....but from what I have read and experienced, if it is rare, and almost never happens......I'll probably be in the small percentage of people who get this crap.....Google Hurthle Cell and see what you find. I did and I am scared.
So- here I sit. Writing my blog which I have been threatening to do for years, by the way. Scheduled to go back under the knife on February 20th. The good news is , Dr's Measles and Supple know my anatomy. They know I am a bleeder and quick clotter. They know I have the trachea of a nine year old and will use a small tube. They use the same incision site and there is not additional scarring, just completion of the original one to heal which will take several weeks.
Keep you fingers and toes crossed......the fun is just beginning!
**Updated on September 4th , 2008. This was my first ever post. It came to me in a dream while heavily sedated. I woke up, grabbed a laptop, and created my blog. Something I had been threatening to do for years. Anyway - As it turns out, the third surgery went off without a hitch. Now I have no thyroid gland. And, those nasty Hurthle cells never had a chance to procreate their little cancer babies in my system. Now, I am slowly trying to lose the 17 lbs. gained while thrown into Hypothyroidism and I am trying to figure out why my blood calcium levels are so low this many months out of surgery. Chronic pins and needles in my hands, arms, legs, feet, face and mouth...muscle spasms and the feeling like my 'meat is falling off the bones'. Measles is stumped - and now it's time to find another doctor.