Well, I still haven't decided if I'm a blogger or not. Last summer, I thought I'd dust this attempt at a blog off again but quickly found that it just ate up too much time that I really couldn't spare to sit and write. So, I quickly set it aside once again. But, I think I may need this spot to chronicle yet another health situation, so here goes again. Maybe "3 times is the charm" when it comes to writing my own blog...
January 21
My standard 3 month check-up post-endometrial cancer rolled around again. The new gynecologist that I was assigned to sometime last year routinely orders tumor marker tests as part of her exam although the previous Dr. didn't. It means that I need to be at the hospital 90 minutes before my scheduled appointment. That can be a drag if the appointment falls too early in the day as I have a long trek out to the hospital.
All was clear, as expected. She gave me an appointment for what has now become part of the routine CT scan of my torso (pelvis to upper chest) to mark 3 years since my surgery for endometrial cancer for April 8. It had been about a year since the last one. An all clear would mean that I could graduate to follow-up exams every 6 months. Nothing to worry about really as I've had no signs or symptoms of a return. On the same day, I would report to the lab prior to the CT scan for a follow up blood test checking tumor markers CA 125 and CA 19-9. I was also given an appointment to see the Dr. on April 17 to hear the results of those tests.
April 17
Shock of all shocks!
Unfortunately, neither the blood test nor the CT scan was clear! I have to say that I was really speechless and someone confused as I had expected to be in and out of the Dr.'s office as just a formality. Now, it seems that I may have a new cancer unrelated to the first! They found a problem with my thyroid in the CT scan!
The Dr. asked if I'd had a breast cancer exam recently. Hmmm... I missed it last year. (What I didn't add was that my community offers a free exam to women in my age group every 2 years but I have no faith in the quality of the exam at all. They are definitely a "get what you pay for" type. I went for it around 1 year-and-a-half years ago and was made rather squeamish and uneasy by the Dr. who conducted the test. He probably was already retired, he looked like a drunk or at least he smelled nasty after a hard night, he didn't really seem very professional, and appeared to be rather enjoying having a chance for a lengthy feel-up of a foreign woman under the guise of being a doctor. Y.U.C.K. Afterward I didn't get what seemed like a proper mammogram on the exam bus as they take one x-ray on the diagonal per breast. That seems like a cost cutting measure as there really should be 2 x-rays taken per breast with a horizontal view and a vertical view. Previously, I had been going on my own to a general hospital once a year and asking for the exam. It costs more that way but I felt like I was getting a proper exam. But, times are changing and it is more difficult these days to just show up and request tests without first going the route of bringing a letter of introduction from a small clinic after a problem has already been found. Also, the hospital I previously went to for exams was ripped down and rebuilt as a regional hospital further away from my home.)
Apparently, the one tumor marker that was off was the one for breast cancer. The other test was still within normal range. The Dr. said that it could be a false positive. She asked if I'd had a cold on the day that I had the test. No, not to my memory anyway but I'd had a cold a few weeks earlier. I mentioned that my grandmother had died of breast cancer. I also mentioned that I have a sister with Hashimoto Disease. (Actually, I'm not totally positive that it is Hashimoto Disease but I know she has hypothyroidism and has been under treatment for it for nearly 35 years.) The Dr. didn't seem to feel that what showed up in the CT scan had any relationship to Hashimoto Disease.
She scheduled me for an ultrasound for April 25 and and another appointment to hear the results of that for May 8. I'd get another tumor marker blood test on May 8, too. The nearly 2 week time lag between the 2 appointments has to do with the Golden Week holiday that would fall between the 2 dates.
April 25
The person who does the ultrasound could be a technician or they might even be a radiologist. I've never really figured out which qualification the person has. They really don't talk to you other than giving commands on where to put your head and feet, and keeps a poker face. There's no use asking them about what they are seeing on the screen as they won't tell you. I always think it is pretty darn amazing that they can even interpret an ultrasound as those just seem like the fuzzy black + white TV screens of my childhood when reception was poor -- so much for layman's eyes! Being too curious for my own good, I snooped around on YouTube and found a training video about thyroid ultrasounds that I watched. I wondered if it could help me understand even a little about what I might be seeing on the screen if it was incidentally turned my way before I got any information from the Dr. 2 weeks later.
When I was finally called into a room for the ultrasound, there was a middle-aged man who would conduct the test and a young man who seemed to be in training. So was it a radiologist and a newly graduated Dr.? I just don't know. But the older guy was explaining a few things to the younger one about the order in which things are scanned. First thing that I thought I spotted on the screen that looked familiar from the YouTube video was a big red streaky looking area on the color Doppler scan bit. Hmmm... Increased vascularity? Now that ain't good! The rest happened so quickly that I really didn't catch any indication if they were looking at a fluid filled cyst, or a hard nodule, maybe even one with calcium deposits... So, still very much a mystery of whether I should be getting nervous or not about what they were seeing.
Yes, the uncertainty of whether I'll need to reschedule my life around new Drs. and new appointments or if I can go ahead and start making some longer range plans is what is frustrating right now. I really don't know much about the thyroid so I did read up a bit just because patient education is so poor here and information is so tightly guarded. I sort of have a feeling that the first time some major health crisis happens (or you think there is a strong possibility of such) you really freak out. I'm calm. I didn't shed a tear (that I remember anyway) over my endometrial cancer. It was found in early stage so I knew the cure rate was very high. I hate that whiny cancer "survivor" mantra that's popular these days. My RA has always been my worse of the 2 diseases but as most people don't know much about it they dismiss it as being something their grandma has. Wrong. RA is incurable and it's very cruel.
May 8
I returned to the gynecology department to hear the results of the ultrasound and to have the next tumor marker test.
The tumor marker was back to normal. It will be repeated again on my next appointment on July 17. If it goes up again it could signal a problem but if it remains within normal range then it was just a false-positive.
I looked up the word for endocrinology before going to see the Dr. so I would recognize it if I heard it as I thought I might be sent to see one after the ultrasound report was in. So I was taken off-balance when the Dr. told me that I'd be seeing an ear, nose, and throat Dr. (ENT)
English to Japanese Vocabulary:
Endocrinology = Naibupitsugaku-ka Now that's a real tongue twister!
ENT = Jibi case
My hospital does have an endocrinology department. I know the kanji for it. It sits next to the rheumatology department. That department seems to see a lot of diabetics, though. But, once a nervous woman sitting next to me out in the large waiting that covers patients for about 4 specialties started up a conversation. She told me that she'd been in a traffic accident and in the x-rays or CT that she'd to access damage they had by chance discovered a problem with her thyroid. So she'd been given an appointment to see the endocrinologist. She was feeling as confused about the whole thing as I am feeling now. So what's different about her situation from mine, I wonder? Why did she immediately get an appointment to see the endocrinologist while I was directed to ENT?
It's a tough call which kind of Dr. I hate seeing more: an Ob/Gyn or and ENT! In jr. high school, I suffer a paralyzed vocal chord after a severe bout of cold, flu, or whatever. I had laryngitis that lasted for months so was eventually sent off to see an ENT. That was pretty traumatic as they didn't have modern endoscopes 45 years ago so the Dr. was poking more than one long instrument and mirror at once down my throat to see my larynx. Talk about painful!!! I was so happy when I finally regained my voice and I'd no longer need to see that guy! Anyway, I'm nervous about what sort of exam I'll be getting as a modern endoscope is bad enough...
The ultrasound showed 3 smallish nodules and one that is larger. There was a written report on the computer screen but I couldn't really grasp what it said as it was in Japanese and I didn't have my reading glasses on so reading anything from that distance is fairly impossible for me. I did notice that lymph was marked (-) at the very end of the report but I couldn't see what had been written in the rest. Oh, and there was a picture of that red streak that I spotted on the Doppler.
May 13
I ended up spending most of the day at the hospital. What I figured out before the appointment by looking at the hospital's website and other places online was that an ENT consult is a surgical consult and Endocrinology deals with the hormonal aspect of thyroid problems. Indeed, that was how things turned out too.
There was a lot of back and forth at first when I arrived at the ENT section in regards to filling out the patient exam form as I was sent down to a machine that asks the questions in English and later spits out a printed form to carry back to the reception window. Some of those questions are awkwardly and senselessly worded. For example: "Appendicitis -- How long ago did you have it?" 10 years ago. "Have you recovered from it?" Gee, I'd be dead now wouldn't I if I hadn't recovered from it?! Yeah, yeah, I know, you CAN actually have it more than once before surgery to remove it. Been there, done that, and in 3 different countries. After all of that process, I returned to the large waiting area only to be called by a nurse to go through almost exactly the same questions again in Japanese.
When I saw the Dr., he briefly looked over the forms and in-hospital letter from the gynecologist. I think he had the cartoonish drawing up on the board that showed the 1 large nodule and the 3 smaller ones and was flipping back and forth between it and the ultrasound report.
He strongly gripped me around the neck like he was strangling me and told me to swallow. He told me that I'd need a fine needle biopsy in endocrinology. (Yeah, learning that new word in Japanese came in handy!) The nodule is about 2 cm according to him. I'll probably need surgery but it might wait a bit. It will depend on the results of the biopsy as to whether there are malignant cells in it or not. End of exam. Huh? That's it? I got up at the crack of dawn, traveled 2 hours for this? But, before I got out of the chair, he said that today he'd send me for blood tests and a CT scan of my neck. He'd make an appointment for me the day after tomorrow to see the endocrinologist. He'd see me in a couple of weeks. He set up the follow-up for June 2. Ok, at least I'd be doing something productive while I was at the hospital by getting some more tests so I felt somewhat mollified.
I went out to wait in the waiting room for those next steps in the process. The CT scan has a consent form to sign and another form to fill out asking about various health conditions, allergies, and so on. I was handed the forms in Japanese and I said that I'd have trouble reading them but if someone read them to me I could verbally answer. The nurse went off to ask about that and was gone for ages and ages. Finally, she called me back into a little room. Bless her heart, she'd actually looked up various illnesses that she didn't know the names of in English and had made memos in the margin of the form! Well, actually, I do know the names of those illnesses as it's the reading and writing part of Japanese that I lack confidence. So we had a bit of a mixed Japlish exchange as she tried to ask me questions in English, and I'd answer back in Japanese, and sometimes things got mixed with both languages in one sentence between us. But again, bless her heart, as no nurse in my 35 years in Japan has ever gone that extra mile to help me understand anything and there were times in my early years here when I could have used such help immensely!
I was sent off for a full array of thyroid related blood tests. Two or three times in the past, I've had the standard TSH, and T3 and T4 tests that are directed at hyper and hypo-thyroid issues but they were all within normal range. I've long thought I could have a hypo-thyroid condition as I have many of the symptoms but the tests always said otherwise. The tests I got this time were far more in-depth and directed at cancer and microsomal problems but included those standards too. I was also sent off for a more in-depth CT with a full view of my neck as the original CT was a body scan that incidentally picked up the thyroid problem.
I'm glad the hospital has an ATM as the extra tests were a bit of sticker shock and I wasn't carrying enough money along with me!
This new problem is showing me that the inner departments of my general hospital actually can work together. During the years leading up to my cancer diagnosis, and while I was extremely anemic from blood loss, the rheumatologist and gynecologist could never seem to get on the same page about just who should be prescribing iron supplements.
May 15
This morning was a bit odd in events. My husband was home today but as the rainstorm had stopped I decided that I'd walk to the train station rather than ask for a ride. Walking sort of clears my head and gives me time to think about things. My feet are in good shape now so I'm happy to walk, really I am. I'd only gone a few houses down the block when a neighbor pulled out of her driveway and called out and asked which way I was headed. She said she was passing in the same direction so she drove me to the train station. She's a really sweet older widow. Some years ago she told me that she had uterine cancer that later spread to her spine. Since it's the same cancer as me, I asked about it today. She said that she was on her way to a different hospital from mine this morning to hear the results of a PET scan that she'd just had. She also told me today that she had the uterine cancer 21 years ago and had been told that she'd be in the clear at year 5. But, around 4 1/2 years into it they found it had spread to her spine after she experienced a lot of back pain. Anyway, that's still about 16 years she's been living with metastasis! Wow!
I got into the city far earlier than I had planned due to the ride to the train station. The bus that starts from the city station to get to the hospital turned into a weird adventure. The driver seemed to be having problems getting the correct route to show up on the bus's exterior. Then, he just opened the doors and told everybody waiting to get on and don't bother to get a ticket as the machine wasn't reading out as it should. He had shoulder length hair which seemed really out of place because bus drivers here usually have a very polished professional look. Anyway, I started to wonder if we were being hijacked by a lunatic and maybe he was going to suddenly veer off course and drive us somewhere else!!! But, he stopped at the correct stops and picked up more people and told them not to get a ticket either. At one point, he stopped the bus and got out of his seat and started kicking the money collecting machine. As people started pushing the stop button at their destinations or (maybe just to escape while they could) he waved then off and refused to take a fare! I was feeling really uneasy about the whole bizarre nature of things and started looking around for a possible weapon if he really was some sort of lunatic on a joyride. I figured that whatever men were on the bus would be worthless in fighting a hostile situation if need be. Hey, remember this is a route that goes to a hospital, after all! I spotted the 2 big wooden blocks attached to ropes at the front of the bus that they use on the tires if the bus is parked on a slope and thought those would be my best weapon if worst came to worse. lol Anyway, he followed the course and gave everyone a free ride!
As I was super early at the hospital, I sat out in the lobby waiting until it was close to my appointment time. They have a player piano there and had it set up today to play 1970s moody music -- Carpenters "Superstar" and John Denver's "Country Roads" are two of the melodies that I remember. Anyway, that music was so evocative of my youth and just brought up so many melancholy memories. Often when I leave the hospital that piano is playing "Pomp and Circumstance" which was (and maybe still is) typical graduation ceremony music in the States. Didn't hear it today, though. Guess I haven't graduated from this new problem yet. lol
It turned into another full day waiting at the hospital.
One thing that I've come to discover over my decade of ill health is that a diagnosis and treatment never comes at the speed at which we are accustomed to seeing on medical dramas on TV. It really is a long process.
Having 2 parents with diabetes, I cut out excess sugar, desserts, fats, and so on decades and decades ago. Another thing I've learned is that we all have an expiration date. Mine seems unrelated to lifestyle issues. None of the illnesses I've been dealing with have anything to do with metabolic syndrome. I actually have excellent blood sugar, cholesterol readings, and any of the other things that I can control, while 3 of my siblings have already developed diabetes.
I thought I'd be getting the fine needle biopsy today in endocrinology as that's how I understood the ENT Dr. to explain it. Instead, I waited several hours, only to be called in to see the Dr. and have her tell me that I would be scheduled to have it on May 20, and hear the results on May 29. What I know right now is that the largest nodule (tumor) is 2 cm in size and that it is hard. Oh, and in that little cartoonish sketch shows it is longer than it is wider. Google that shape, plus the fact that I've been told that it is hard and the size, and that ups malignancy risk to 93%. But, until they've checked the pathology on the biopsied cells there's no certainty that it is cancer, or which of 4 main types of thyroid cancer, or if it might even be a metastasized cancer from another location such as the breast. The Dr. today didn't say anything about the blood work that I had done 2 days ago. She only talked about the cartoonish drawing of the ultrasound results. She's the head of the department and got her medical degree about 30 years ago. She had a nice manner about her. Sometimes Drs. here are really gruff but she wasn't like that so that was nice. She explained the biopsy procedure to me very carefully and said it is preformed the same way as in the US. (Well, actually from Googling it beforehand I read that in the US they first numb your neck before jabbing the needle in several times but she told me there would be no anesthetic and each jab will last around the slow count of 10).
Yes, I'm happy they are being very proactive. The rheumatologist I had up until recently would have just told me it wasn't related to RA if I had asked him about spotting a lump in my neck. Then, he would have suggested I find a clinic somewhere else to have it checked if I was concerned. Then, when I did find a clinic, they would want to know why I hadn't gone to a Dr. within the out-patient hospital system I was already being treated in for the RA and post endometrial cancer and send me back to that hospital again. It would have all been very Catch-22. Been there, done that with another problem which was orthopedic in nature but wasn't an RA problem according to the rheumatologist. I wasted so many hours in waiting rooms, so much money, so much time, and all in so much pain! So, I'm glad I'm not dealing with that again and that the CT scan spotted it without me presenting myself to appear to be a real hypochondriac whining over nothing! But, already this has caused me to be scheduled for trips back and forth to the hospital for some extra 8 or 9 visits that I hadn't counted on so that sure is sucking up money right and left even if it should turn out to be something that isn't much to worry about.
