It has been quite some time since I did a thyroid cancer update. You can read my previous updates and more about the whole process of my thyroid cancer journey here.
With my recent extended check-up this month, I thought I should update and talk a little about the ongoing monitoring and what all that entails. Also, I need to vent about the absurd process I had to go through just to schedule this round of check-up events. Read on....
Basic monitoring of possible thyroid cancer recurrence, as well as how your body is adjusting to medication, involves blood work at least every six months. I imagine farther down the line they may only do it once a year, but I'm not there yet. I had papillary thyroid cancer which is deemed the slowest growing and least aggressive type of thyroid cancer you can have. That's why idiot doctors like to call it "the good kind of cancer", as if ever having cancer would be considered just dandy. It is still cancer, so all the fears and anxiety and worry that comes with that are present. All the time.
Along with having my thyroid removed, I also had a parathyroid (those produce calcium for your body) and four lymph nodes removed. Yet because of my age and overall good health, and because I had the least aggressive kind of cancer and a successful surgery to remove as much as they could find, my prognosis has always been a positive one. I think there is still always a chance it could come back, so my endocrinologist sees me every six months. Along with blood work, I have a yearly ultrasound of my neck. The blood work mainly tests the TSH, Free T4, and Thyroglobulin. Sometimes they also check my vitamin D and calcium, but if I want a truly comprehensive look at my blood work I have to rely on my naturopath general doctor for that.
Just a refresher course: TSH (thyroid-stimulating hormone) is produced by the hypothalamus and released by the pituitary gland in order for your body to make the two types of thyroid hormone it needs to control your entire body (T3 and T4). Your thyroid doesn't just affect your metabolism, it affects every part of your body and pretty much every organ. This is also why your doctor should order more than just a TSH test to really check the health of your thyroid. A comprehensive thyroid panel includes the following tests: TSH, Free T4, Free T3, Reverse T3, TPO Antibodies (if you suspect Hashimoto's or have hypothyroidism), TSI Antibodies (if you suspect Graves or have hyperthyroidism), Ferritin/iron, Vitamin D, and even B12. Various kinds of anemia are also common in people with hypo/Hashimoto's, so all these tests are very important for getting a whole picture.
This Time Around
For this most recent check-up, I had to do a round of shots of a substance called Thyrogen, along with blood work, that would help my doctor see if I have remaining thyroid cells - normal or cancerous - still hanging out in my body. I had to take these shots prior to my radiation treatment because it helps to stimulate thyroid cells. Prior to radiation it was stimulating my hungry thyroid cells (I had to do a two week low iodine diet to starve them) to drink up the radioactive iodine in order to kill off any remaining thyroid cells in my body. Getting rid of those cells helps to insure I don't have cancer growing within those cells in the future. Using Thyrogen also means I don't have to stop taking my medication. If that happened, I would feel like complete and total shit until it kicked in again. We're talking fatigue so bad you can't get out of bed, brain fog so bad you can't remember anything, depression, anxiety, muscle pain so bad it hurts to move, headaches, and TONS of other things because - YOUR THYROID AFFECTS YOUR WHOLE BODY. If the zombie apocalypse comes and I run out of medication, I will be dead within a year or less.
This go round I had blood work done to test my TSH, Free T4, and thyroglobulin a couple weeks prior to my appointment. Thyroglobulin is a protein produced by both normal and cancerous thyroid cells and is tested to measure the presence of thyroid cells in your body. It is most commonly tested in people who have had their thyroid removed due to cancer in order to keep tabs on whether there are functioning cells still in there somewhere. Two days in a row I had to go in super early and get shots of Thyrogen in my butt. This time the doctor said I could choose the butt or the arm. That needle is MASSIVE, so I chose my cushioned booty so I wouldn't have to see it. It did sting and I did have a bruise, but it was not too bad at all. On day two, she also took some blood to measure the TSH after the first day. It was up to 37. For reference, my TSH is usually 0.02. Normal TSH should not be higher than 3.0. Using the Thyrogen drives up my TSH, but the good part is that is doesn't really have an affect on me because the nature of the substance. Some people can get nausea and headaches, rashes, difficulty breathing, weakness, dizziness, vision problems, etc. from it. Thankfully I have had no issues.
From there, I had to wait two days and then go back to the hospital for blood work on Friday. Again, they tested the TSH (it was down to 7) and the thyroglobulin. Then I had to wait two weeks for my results appointment. And yes, I still get major anxiety during these various waiting periods, in addition to the regular amount of anxiety I have. Fun times. I am happy to report that the thyroglobulin remained undetectable, which means the chance of recurrence is still very, very low! YAY!! My next check-up will be in August or September with blood work and an ultrasound.
Now, you are more than welcome to stop reading here, but if you want proof of the asinine shit show trying to schedule all of the above was than keep reading. I need to vent to more than just Sean. I don't even think I have seen my friends long enough in the last two months to tell them about all of this. PS - There is some cussing in this part, but it helps convey my frustration. Sorry if you are averse to cussing.
This year has flown by so fast, so it is no surprise that February kind of came out of nowhere. Thinking about scheduling injections and blood work and appointments wasn't on my radar because I was happily enjoying my life that I am grateful to have. I have been super busy in a good way. Plus, the doctor's office calls to schedule appointments anyway. This particular doctor's office has been known to call me at the last minute for things though. The first time I had a follow-up ultrasound, the receptionist called a week before my appointment freaking out that she needed to schedule my ultrasound. And when she freaks out she makes it seem like a life and death thing where I am about to die if I don't do what she needs me to do - right this second! Now, I live day to day on about a 6 or 7 level of anxiety, but when this crazy lady calls (let's call her Wanda) I go from 6 to 50-OH SHIT I am going to die and she just isn't telling me what is wrong with me!!!
The following events can be a bit hard to follow, which is one of the reasons I wrote it all down as it happened. I'll try to make it concise for you guys because it is ridiculous. Wanda called me on January 29th and left a voicemail telling me that I would receive a call from the Specialty Pharmacy to talk about the Thyrogen. She said I needed to talk to them before I talked to her to schedule an appointment. Later on I would find out that she called me on this Friday before February expecting me to do everything needed in a few minutes to schedule my appointments for the following week or two at the latest. Again with the last minute bullshit I have come to expect from her.
On February 2nd I received calls/voicemails from both Wanda and the Specialty Pharmacy. I was busy, was out of town a few days, had some family drama on several levels I had to deal with, so I decided Wanda could take a backseat for my sanity.
February 3rd I had another call/voicemail from Wanda to tell me that she called me on Friday and Tuesday and that she also knew the Specialty Pharmacy called me on Friday and Tuesday. Bravo, Captain Obvious Wanda! I know you called me three times in the past five days. Despite all the hullaballoo I was dealing with, I called the Specialty Pharmacy and talked to a nice person about my insurance and how much the Thyrogen would cost. By the way, it is usually about $5,000 but with my insurance it is only $1,000. And that $1,000 is due within 30 days of treatment, so not only did Wanda want me to not have a life, do a bunch of back and forth calls, and schedule an appointment immediately, she also wanted me to have $1,000 to just throw up in the air at that very moment.
Less than a week later, on February 8th, I called Wanda and spoke to her about how I did call the pharmacy and was ready to schedule my appointment. She asked a few questions and decided I had only talked to someone at the pharmacy about billing and told me I needed to call back to talk to an actual pharmacist. I told her I would call the pharmacy and call her back once I talked to a pharmacist. I was on hold with the pharmacy for about ten minutes when a tech came on and said that all the pharmacists were still on calls and super busy, so I left a message for them to call me back. This was during my lunch too, so I went back to work and didn't hear the phone ring in the afternoon. The pharmacy was returning my call. Apparently Wanda called me back at the exact same time and also left me another voicemail saying she never heard back from me so she called the pharmacy to check up on me and they said they hadn't heard from me either. So she told me - again - to call them and then call her to set up an appointment.
Two days later on the 10th, I got another call/voicemail from the pharmacy while I was not available. On the 11th there was a voicemail from Wanda (her voicemails were progressively pushy and rude). I also received a letter from Wanda that same day telling me that she couldn't get in touch with me and had contacted me five times with no word from me. Of course my first thought was, Bitch please! I just talked to you three days ago!!
The next day I finally had some free moments to call the pharmacy, and actually got to talk to a pharmacist. She said they had been swamped and the phones were constantly ringing, so she apologized that she hadn't been in touch with me before. The pharmacy people are super duper nice. We went over medications and supplements I take and she explained the Thyrogen process to me again even though I had done it before. She also told me about a Thyrogen copay assistance program that might help cover some of the cost of the medication.
A couple days later (the 15th), the pharmacist called me back to see if I had word from the copay assistance program. I called back and left a message with the tech (all the pharmacists were busy) stating that I hadn't had time yet to call the assistance place but I would do so that day. When I called the assistance program, they said that they couldn't do anything for me until the doctor sent in the form first. They said the doctor had to make the initial contact with them in order for me to be considered for the program. That seemed like a huge annoyance considering how hard it is to talk to Wanda and how much I hate her attitude, so Sean and I thought maybe it wasn't worth the trouble. We didn't even know if we would qualify because we have insurance and we aren't considered super poor or anything. Still, I thought I would call Wanda again at my next convenience and ask her about getting the form going on the doctor's end.
On the 17th, I saw an incoming call from the doctor's office. It was in the early evening after I had put my work away, so I figured it was a good time to talk to Wanda about the assistance program. But it wasn't Wanda, it was someone we will call Kristy, an office assistant of sorts. Kristy was a woman of few words, breathing deeply into the phone during her long pauses of unhelpfulness. She was snarky and rude, asking me if I ever planned on seeing my doctor, what was I doing instead of calling, why hadn't I talked to a pharmacist yet, why did I never pick up my phone. I told her I already talked to the pharmacy for billing and medication purposes after contacting Wanda already, and that I just recently talked to the copay assistance program that informed me the doctor had to make the first move in submitting the form. Kristy was huffy and told me they don't have any forms. So I offered to email her forms. I was met with silence. I offered to fax her some forms after I found them on the internet for her. I was met with silence. Finally I asked if they even have a fax number, to which Kristy hmmphed rudely and said , "of course we have a fax number." Then silence. I had to specifically ask for the number before she gave it to me.
I am not someone who likes confrontation in any form, so to be attacked by this awful person in such a rude and accusatory way was very upsetting. I am a normal person with a job and responsibilities and obligations I told her, though my heart was beating hard and fast in my chest and tears were welling up in my eyes from anger and feeling attacked. I told her that I thankfully have a life and I can't just drop everything and do everything that everyone else wants me to do. It doesn't work that way. Plus, it isn't like the pharmacists were at my beck and call to get that done either. I'm not sitting at home waiting by the phone for Wanda or Kristy or the Queen of England to call me. I am not a slave to their desires. That's basically what I told her. I never even cussed at her, which was a big deal for me. I was livid. When I hung up, I was shaking so bad. I started crying and told Sean that I couldn't talk to any of them anymore. It was too much anxiety and worry and rudeness. I refuse to be treated that way. No one deserves that.
The next day (the 18th) I got a call from the Specialty Pharmacy asking about the copay assistance program again because they were being pressured by the doctor's office to get the medication out. They needed my go ahead first. I called them back and had to leave a voicemail telling them that I was still looking into the assistance program but had to get the doctor to submit a form first before we could move forward. I told them about the rude person at the doctor's office who said they knew nothing about an assistance program or forms, so I would have to fax them over to the doctor once I found them. (And actually, the forms are right on the Thyrogen website, KRISTY!)
Not too long after that I received a call/voicemail from Wanda telling me about an assistance program through the hospital and that she was scheduling the Thyrogen for delivery. So you know she was harassing the pharmacy to check up on me. Plus, she was scheduling the medication without my go ahead and without me having even made an appointment yet.
A few days later I got a call from the pharmacy telling me that they called the assistance program and that I could apply myself and be reimbursed after the fact. The pharmacist gave me the phone number to the program and said the medication was being sent to the doctor's office the following day.
Sean had to take it from here because I was a basket case. He looked into the hospital based assistance program that Wanda mentioned, only to find it is for low income people with life-threatening issues. He wasn't even going to tell me about it because, of course, I freaked out thinking Wanda knew something about me that I didn't know yet, i.e. that I was about to die at any minute. Sean had to call Wanda and schedule my appointment. This involved him talking to Wanda, then calling the pharmacy to talk to a pharmacist, then calling Wanda back to tell her he called the pharmacy. Then Wanda had to call the pharmacy to double-check that he talked to them. Only then did Wanda call him back and schedule the appointment. What kind of absolute idiocy is that kind of system????? I am pretty healthy and it was a total shit show to me, but can you imagine the people who have more serious issues to contend with on top of all this mess??? It blows my mind.
Miraculously, Wanda called a few days later and left a message in a very friendly tone saying that she called the Thyrogen copay assistance program, that I was approved, and the program was sending me all the information in the mail. So it was also only after she talked to a man that she was friendly and willing to help and suddenly knew about the program she, and apparently the entire office, had no knowledge or forms for just days before.
I did receive the information from the program. We still had to pay the $1,000 up front, but the program is supposed to reimburse us $400 after we mail them receipts and all that good stuff. Hopefully, that will happen as it will be a big help.
If you have read this far, thank you for listening. I am glad I got that off my chest. Needless to say, I will be having Sean deal with them from now on because I do not have the patience or bitchitude to deal with them and not have it get to me. It enrages me that they only seem to treat someone with a penis with respect and decency, instead of treating everyone else that way from the beginning.
If you want to vent about something, go right ahead. I will listen. I owe you one.