In April 2013 I was being evaluated for which type of cancer I had. Rectal or Anus. I got the better of the two Anal. That’s beside the point. However, it was at this time I began getting FREQUENT blood tests. While I did not know this until after I was done with two weeks of chemo and thirty radiation treatments, my blood calcium levels were high. Indicating another problem.
Well, of COURSE it did. When I am finally healing and well into recovery my chemo Doc tells me he wants me “to see an Endocrinologist because your blood calcium levels are high indicating possible HyperParathyroidism.” “HUH?” “You have to much calcium in your blood.” “HUH?” “You need to see an Endocrinologist.” “Who do you recommend?”
Ok, fuck. I have just survived THIRTY HORRIBLE RADIATION TREATMENTS . Now, I have something new?!?
After a couple of weeks processing or not as it were the reality that I likely have HyperParathyroidism I make an appointment with an Endocrinologist. She had GREAT HealthGrades. It takes months to see her. I am patiently impatient.
I finally meet her and begin the process of verifying the proposed diagnosis. I have more blood tests AND I get to do a 24-hour urine (You-Rhine or Your-in) collection. The urine must be kept cold (except for when it is still inside the body). I can do this. No problem.
The blood and urine tests come back in a couple of days. It seems I have Hyperparathyroidism. Duh. When I go back in to talk directly (and pay another co-pay) with the Doc she confirms I have it and we talk about what it is and what it does when it is not working properly. Then, she says while my blood calcium levels are high they are not yet, high enough to warrant surgery. “Let’s wait a while and keep an eye on your levels.”
One day I am talking to an older cousin who tells me she had hyperparathyroidism. She told me ALL about hers in great detail. This was a good thing because, the Doc wanted to know if there was a family history. Now, I could tell her, “Yes. One of my female cousins.” My cousin even sent me a photo of the glands, once removed, against a measuring tape on light blue cloth still IN the operating room!
Again, this was good for me to have for my Endocrinologist. My numbers are still not in surgery land. I wait another six-months. This time my numbers hit the jackpot. 11.5
Too much calcium being released from my bones and floating around in my blood. It is likely I will get Kidney Stones as a result. What fun to look forward to. NOT.
Now, I have to find an Ear, Nose and Throat Surgeon. I found one. He ONLY operates on these types of cases. Not ear or nose. Lucky me. So, about six months pass and I have another blood test (woo-hoo no urine collection) to see if the levels are staying the same, lowering, or rising. Can you guess? Yep. My blood calcium levels are rising. However, they are not quite high enough to warrant surgery.
Around late April (see a trend here anyone?) I begin making appointments to have an ultrasound and an x-ray. Done and done.
Or so I thought. Turns out after getting my neck mashed for about 45 minutes by the transducer the ultrasound tech tells me, “I am not sure I was able to get what your Doc wanted.” “But, did YOU see it at all?”
“I will have to let the Doc make that call. Your Doc will be calling you with the results.”
Approximately, two weeks later I call my Doc to ask what the results of the ultrasound and X-ray were. They do no have them. “WHAT?!?!?! It’s been two weeks. Usually, I have results back in a couple of days.”
“We will check on them and have the Doc call you right away.”
Tick-toc. I call again a day later and finally they realize they “never received the reports. That darn hospital is so slow in sending us their reports. We will call and have them faxed over today.” Uh-huh.
Finally, the Doc calls me. “I need you to have another ultrasound and an MRI.” “Why another ultrasound. I just did one.”
“It appears that your thyroid is not up on your throat. It is lower down under your clavicle.”
“I have ordered these two new tests.”
“They will call you to get it scheduled.” Yeah, right. A week or so later I hear nothing. I call the Doc’s office again and tell them this timing thing is getting really old. They were so apologetic and nice. “We will call the scheduling office and get this moving right away.”
They did. Only it would be two MORE friggin’ weeks to get in. Fine. The appointment time rolls around and I go to the MRI on a Saturday up at OHSU. The ultrasound is on Monday.
For the MRI I have to be placed in the machine with my chin tilted up to the sky. Now, I already have a fused C6/C7 spinal vertibrae and plenty of messed up neck muscles. The MRI tech gets me all situated and leaves the room. Encouraging, right? No. I ask him, “How long will this take?” “About an hour.” He tells me, “This first picture will take six minutes. The next two will be about three minutes each.”
What? How many pictures does an MRI take to make one cohesive image? I have no idea and did not ask the professional because, I was frustrated and my neck fucking hurt. I ask the microphone embedded in the machine three inches form my nose, “How much longer? My neck is starting to spasm.”
Near the end the tech tells me, “We should be done in about 15 minutes. Can you last that long?”
Sure, I am fucking tough. “Yes.” I am sure I can. I have endured worse. Not that this makes anything better. Just affirms I am tough.
Finally, it is done and my neck, head, and shoulders are KILLING ME.
I make it through the weekend. Monday early is the SECOND ultrasound. I have an expectation of about twenty minutes or less. I should never get to secure about my presumptions. I mean, I have had many ultrasounds before. Like for each kid multiple views as the months move along. I had MRI’s for my neck pain and back pain. I have had epidurals viewed on Flouroscopes.
Wrong again, my friend. I go to the ultrasound appointment. The female tech helps me get up on the table and position my head in my favorite and oh so (insert growl when saying) fucking comfortable chin to sky position.
Then, the procedure begins. She is looking all around my clavicle for the thyroid in order to locate the parathyroids. The more time goes on the more she is mashing the transducer into my very bones. I am sure she was trying to torture me.
I ask her, “Are you able to find it?” “I am. I just need to get the proper angle.” This mashing on me goes on for forty-five minutes. Then, she tells me, “I am going to get a Doc in here. Give me just a minute.”
Less than five minutes later a woman in a white coat came in and SHE began mashing around for ANOTHER FORTY-FIVE MINUTES! By this time it is clear neither of them can locate anything.
By the time I leave a full HOUR and a HALF my neck muscles are so tight they cannot even scream because they are being choked too hard. I call my Chinese Medical Doctor. LaC friend to see if she can fit me in. “Sure, if you get here by three I have an opening.”
It was 2:45 p.m. “I am already on my way.” I was nearly in tears. Usually, accupuncture eases my neck muscle cramps. However, after a full treatment I was still locked up. Luckily, my friend suggested I get a massage from her suite mate who is a masseuse. Her hands are not strong enough for what I need.
I go into the room and he starts kneading me. Hard. He puts his fingers hard into my muscles and they still won’t give. He put his elbow into one spot and put all his weight on it for a couple of minutes. He was somewhat surprised that did not unlock the muscle. There were multiple professional knots even the professional could not unlock in a one-hour session.
I finally heard from my Doc. Although it was TWO WEEKS LATER and AFTER A COUPLE OF CALLS FROM ME ASKING, “WHERE ARE MY RESULTS? IT HAS BEEN A WEEK and then, TWO WEEKS! This is not acceptable.
Finally, the Surgical Neck Specialist calls me and tells me that my thyroid is actually below my clavicle, and in my chest. Making it is too low for him to perform the surgery. “You will need a Thoracic Surgeon. I will be glad to recommend one to you.” He did.
I called the Thoracic surgeon whose office staff told me the hospital he uses is not “in-network” for my insurance.
I immediatley spend the next couple of days researching highly ranked Thoracic surgeons that ARE “IN-Network. Now, I am waiting for a friend to vet the names I found are highly thought of in the medical community and call me back.