Back from the Dr.

Yesterday was my Ear, Nose, and Throat Dr. (ENT) consult. I came away from it much more relieved than I had been since this whole thing started.

The Dr. told me that my fine needle biopsy results were a gray zone. (I had already heard this from the endocrinologist last week and then spent the next few days searching the web to understand just what that means and why is surgery warranted.) As there is a good chance that the thyroid nodule is benign, they will wait until it has reached the size of 3 cm before progressing on to surgery. It is currently 2 cm I've been having CT scans related to my endometrial cancer at a scheduled pace and nothing had ever turned up in them that I'd been informed of so one of my concerns was just how long I've had this problem and how quickly has it been growing. The Dr. was able to access my 2011 CT scan as the earliest one and said that the nodule showed up in it and it was 1.5 cm then. To my ears that sounds hopeful that I won't need surgery anytime soon. Whew...

I asked about surgery just so I can mentally prepare for it. He explained that the operation takes about 2-and-a-half hours. First, they remove the side of the thyroid with the nodule. Next, they do a quick check to see if they can determine cancer or not. If there is no cancer then the surgery is finished but if they find cancer then they remove the other half of the thyroid. The time spent in the hospital is 7 days. On day 7 they remove the stitches and release the patient. Normal life can resume from day 10.

One piece of good news was that if they only take half of the thyroid I will not need the hormonal replacement therapy. That was another big relief. I was happy to hear that the treatment all in all is conservative as I'd been reading online what I could in English. It sounds as if the treatment plan in America is much more radical and aggressive for people over 45, even though about 80% of people with this inconclusive result prior to surgery only have a benign condition that really doesn't warrant removal of the entire thyroid and life-long hormonal replacement.

Next, I wanted to know about radio-iodine treatment if it should prove to be cancer. I have 2 small grandchild who may be moving in with us in the future and I read a lot of scary stuff about that treatment and wanted to know how things are done in Japan. He said that it's taken in pill form and that I won't be able to have contact with small children for 3 to 6 months afterward but my grandkids could actually be grown up by the time I get to that stage of things. He said that treatment is selected according to patient.

He did mention that the type of cancer I might have can metastasis to the lymph and lungs.

Anyway, I felt much better knowing that I won't have to have an aggressive surgery soon so can start start making plans for some fun things in the coming months. I'll have my next follow-up appointment in 6 months, with an ultrasound first, and then seeing the Dr. soon afterward on the same day.

Fine Needle Biopsy Results

Yesterday was my scheduled appointment with the endocrinologist to hear the results of the fine needle biopsy that I had on May 20.

The appointment was scheduled for the late hour of 4 p.m. I don't recall ever being scheduled for such a late time-frame even when I was still being evaluated for problems that lead up to my endometrial cancer surgery. I was the only person who got off from the bus when it stopped at the hospital and the waiting room was nearly empty when I got to the section for endocrinology. As the minutes ticked by I eventually found that I was the final person in that massive area and even the staff at the reception desk was picking up and leaving as it neared 5 p.m. But, eventually I did get buzzed back to the inner waiting hall where there were actually a couple of other patients waiting. It was around 5 p.m. then. But, as more time ticked by I was the absolutely final person there and a nurse had even popped out of the exam room and removed her name from the board.

The time spent with the Dr. when I was finally called in was fairly short. She seemed a bit flummoxed on how to speak with me. But, I hadn't wanted my husband to come along as I didn't want to be diagnosed with what I term the "Pet at the Vet Syndrome". That's when a Dr. sees my native speaker of Japanese spouse and then suddenly I get sidelined and must mutely sit there while everything is then directed at my spouse as if I can't speak for myself. That can be really annoying and frustrating as he has a tendency not to pay much attention to any of my medical issues and really doesn't understand what's going on so he isn't a good advocate for me at all!

Anyway, for me, the result was the worst one possible. The results came back "inconclusive". The Dr. said that in 85% of cases a clear diagnosis of benign or malignant can be made with the fine needle biopsy but in 15% of cases the verdict isn't clear. That is basically the same as what I'd read online. She said that thyroid cancer grows slowly so I can probably decide to have surgery soon or wait another 6 months to a year. Anyway, she said that it's the thing I'll need to discuss with the Ear, Nose, and Throat Dr. (ENT) on Monday.

I've needed some time to read up on just what an inconclusive result means and why surgery is warranted. As I understand it, in the case of Follicular neoplasms or Hurthle cell neoplasms they can only be diagnosed after surgery when the entire tumor has been thoroughly examined under the microscope. The major problem is that in about 80% of cases it will prove to have been benign and only 20% of cases will be malignant. So 80% of these patients will have undergone a surgery that removes either their full thyroid or 1/2 of their thyroid and will then need thyroid replacement for the rest of their lives! Goodness gracious how behind the times is that?! I've been reading online about new developments in gene testing to improve the chances of a better diagnosis before such a drastic surgery and that certainly can't come fast enough for me, I'd guess!

I've also been reading online about radioiodine  treatment post-surgery if the tumor proves to be malignant. It sounds really miserable as I won't be able to have contact with children (i.e. my grandkids!) for a certain time period, I could set off radioactive detectors in airports so can't fly for awhile, have to use separate utensils, can't cook, need to double flush the toilet after use...

So, Monday is the day I'll hear what the ENT Dr. thinks about the next steps. This weekend I'll need to think about life planning over the coming year to decide when might be the best time to go ahead with surgery and post-surgical treatement with radioiodine if need be.

I've had an appendectomy and that surgery was a "no brainer". I did have to go into my hysterectomy not knowing for certain if the atypical cells had progressed to cancer yet or not. I remember feeling relieved when I did hear that it was cancer as then it felt like a reasonable justification to lose my uterus, fallopian tubes, and ovaries. But this?! Two months ago I thought I'd be getting a "routine" CT scan as standard follow-up for my endometrial cancer to mark 3 years post-surgery. I certainly never expected this strange outcome.

Memory Lane With Betsy McCall

Long before the flashy commercialized scrapbooking of today, I had an old fashioned scrapbook in childhood. It was just brown paper sheets held together in some sort of simple binder as was common in those days. With just a jar of paste, I could save the ephemera of my time though. I don't think I filled the pages up completely because at some point a quarter century or more ago I only removed some pages from it to ship to my home here in Japan.

Gee, just HOW old was I when I decided on that page title for my scrapbook?! By the way, isn't my hair cute? I woke up on school picture day with bed-head. In a moment of panic about sending me off to school like that, my mother borrowed some of my big brother's Brylcreem! I was horrified that I had to go to school sporting a "Little dab'll do ya!"!  It was decades before mousse and the only hair wax anybody had ever heard in those days was "butch wax" which was used by boys to make the front of their flat tops stand on end! Anyway, the glossy look sure hadn't become fashionable yet so I was just plain m.o.r.t.i.f.i.e.d!

Anyone else remember waiting and waiting for the next issue of your mom's McCall's magazine to arrive in the mail when you were a kid? I was born in the baby boom generation and McCall's was definitely on to a good thing when they thought up the Betsy McCall paper dolls that took up a page in each issue. The artists who drew the dolls changed from time to time. But I definitely think the artist who rendered the dolls during the time that I was in to playing with them was one of the best. I can't recall my older sisters ever even mentioning Betsy McCall paper dolls once we'd moved beyond childhood. But, I still think of sweet little Betsy. When I discovered a link online to see just what the artists were rendering in her imagine when my older sisters were small I can understand that they probably didn't develop the same affinity for her as I did. She just wasn't as cute in the 1950s!

Not only was Betsy McCall a wonderful paper doll series featured each month in the magazine along with a little story of her adventures with her mother, dog Nosey, cousins Sandy and Linda, friend Sukey, and then later the arrivals of new twins Kerry and Merry, she also had her own paper doll and dolls in her likeness. The series were also brilliantly subtle advertising. In the fine print there were often listings of where her fashion could be purchased or just which McCall's pattern number she was wearing so that mom could stitch the same thing up at home. Many months an address was listed and for a fee of 25 cents you could get the paper doll on sturdy cardboard with extra outfits. Also, the little story that went with the paper dolls might even be a bit of advertising for things such as charitable donations for UNICEF. It was all very cleverly conceived.

Before I was old enough to read the little stories that came on the page with the paper dolls, I remember having some nice lap time with my mother curled up against her warm belly while she read the month's story to me. She probably was hoping there was nothing of interest on the backside of the page too. Then, I could rip it out quickly once we'd finished the story and I sit down for some play while she read her magazine in peace before my older siblings got home from school and the baby slept. The build up to the arrival of twins came just as my mother was expecting another baby too. Oh, what a warm glow of nostalgia it all brings back.

I could identify with Betsy with her short brown hair and closed mouth grin. I had to endure a lot of teasing by my siblings before I broke the habit otherwise I'd still be smiling like that for the camera today!

Would you like a trip down memory lane too? I found this nice link to view pretty much the entire series of Betsy McCall paper dolls.

http://www.thebleudoor.com/betsymccallhome.htm

Peaceful day

A quiet day at home can be so ephemeral. But, I feel as if I got lots done today while still taking time to relax and enjoy the moment.

After the morning rush of making o-bento and getting my husband out the door. I took a quick look around the yard to enjoy the May flowers. 

            I've grouped some reds together in planters and they are looking pretty.

I was actually hoping to get this amaryllis to bloom out of season at Christmas but there was no such luck. It certainly is pretty now, though!

Hey, there's a first bud on this morning glory! Last year I planted just one morning glory and it certainly didn't thrive. In fact, it only put out a couple of blooms before dying off. I think I moved once too many times after transplanting and that seems to have been a no-no. This year, I've tried 3 different colors of morning glory. Two of them were labeled as "unique" so it will be interesting to see what happens when and if they bloom.

We opened up a new space this year for some transplanted garden plants. Here we put shiso, goya, morning glories, parsely, basil and a mini tomato. The basil already looks smaller than it did the day we transplanted it! :-(

I moved bearded iris plants around some months back and unfortunately there have

 only been a few bloomers this year. This one has come on later than the others that had different sunlight conditions.

This area looks cheerful now.

This particular rose has done really well this year. It had one very long floppy stem that we tied down horizontally in the winter and that caused it to put up lots of new flowering stems this season. It doesn't hold its petals long, though.

Rainy Season will be here soon enough, as evidenced by the hydrangea starting to show color. With rainy season comes mold. Mold. MOLD...

For now the fine days of May still reign, though. Although the forecast suggested there might be afternoon rain or even lightening and hail, a gentle breeze and a clear blue sky encouraged me to do several loads of laundry this morning anyway. First, there was the daily load to hang on the line. As things still looked as if they would dry quickly today, I started washing wool sweaters to put them away fresh and clean until the autumn. I ended up doing 11 sweaters and they all dried quickly! Scratch that job off the do-to list. I'll still need to get some non-scent moth protection packets to put in the closets and drawers as I discovered that I was down to my last little packet when I started putting the sweaters away in the late afternoon.

The entire bath, walls, tiles, and so on also got a good scrub this morning, too. It's a prime spot for mold so a pre-Rainy Season scrub hopefully will discourage some of the early nastiness from appearing once the humidity cranks up several notches.

While I was sorting sweaters to decide which to wash today, I also moved my summer and winter clothes between closets.

I got the kitchen sink scrubbed down, too. By the time those jobs were nearly completed it was noon. As I was brewing a pot of water for a cup of tea with lunch, I spotted the first centipede of the season crawling around on my lace curtains on the kitchen window above the sink. So, my cup of tea was put off a bit longer so I could splash some boiling water around the window frame and hopefully I got the centipede in the process. They are one of the nasty critters that I really hate in the warm/hot months as they do have a poisonous sting. I'll leave a spider alone in the house as I figure it will hunt and kill other insects but a centipede needs to be dealt with as quickly as possible!

As I folded up the big pile of laundry when 2 p.m. rolled around, I discovered an interesting documentary on TV about the Rolling Stones. Keeping an eye and ear on that I also started to arrange some fresh flowers from the yard as the I discovered the gentle breeze was turning into enough of a force to knock down the lone iris that bloomed this morning and was whipping my roses around pretty good too.

Yes, it was a nice day! 

To top it off I made inari sushi for dinner. 

The predicted rain is finally pelting down heavily now. Cracks of lightening proceeded it. There's nothing like enjoying the comforts of home during a rain storm. 

Biopsy -- One day after

In the interest of keeping a timely log, just in case I need to refer back later on, here goes with how the biopsy mark looks one day on.

Not a very nice photo, I know. I don't have a feature to draw little circles to give emphasis on what I want to show, and this photo gives the most contrast. So, in lieu of a prettier picture, I'll stick with this one. The red circle in the center is easy enough to spot as one of the biopsy points. As for the second one, it appears to be the rather tiny pinkish spot to the right of the photo. But, that would suggest one problem... My large hard nodule is actually on my right. So that pickish spot should appear on the left of this photo, correct? Remember I said I heard that young Dr. become flustered with the second needle prick and ask what to do? I could be totally wrong, of course, but I'm guessing she made a mistake in the placing of the second needle prick. Oh great...

With a fine needle biopsy there are 4 possible results, I've read.

1) benign

 2) malignant

3) indeterminate between malignancy or not

4) not enough cells taken so the test needs to be repeated

Well, I sure hope she got enough cells because I sure don't want to repeat this test! I still feel like I got a karate chop to the windpipe when I move my head up or in some other positions. The little red dot might not look much worse than a bug bite and touching it doesn't hurt but still... ouch!

I checked out a few more YouTube videos last night on thyroid fine needle biopsy for comparison. The first one that Google popped up with sort of seemed like a lesson in everything you, the patient, aren't supposed to do during one! There was a rather silly-ish young woman having it done and maybe her friend was recording it with an iPhone in a Dr.'s office. The needle was in her neck and someone starts re-arranging the pillow under her, for starts. She's chatting from time to time while the needle biopsy is on-going. I can clearly see her swallow, too. I think she even waved at one point. Anyway, absolutely every thing I was warned against during the procedure she did during the short video. It must have been hell for the Dr. but I guess he should have been in better control of the situation.

One point was very different between the videos or imagines I saw online and my experience yesterday. In all of the things I saw online, you can clearly see what the syringe looks like. I didn't have an anesthetic and I really don't see the point as that would still be a needle prick. But, yesterday what I saw was just a white, wrapped in toweling sort of thing in the Dr's hand and it was placed on my neck the entire time just like that. Surely that must have been done to ease anxiety over seeing a syringe coming at me, the patient.

Well, I'll know the results, whatever they might be on May 29.

Fine Needle Biopsy

I returned from the fine needle biopsy a short while ago so I want to get my impressions down while they are still fresh in my mind.

I was scheduled for 1:30 p.m. and arrived at the hospital's lab and ultrasound section about  5 or 10 minutes early. I was called soon and given a big plastic card to hold and told where to wait. There were at least 7 other people with the same type of cards waiting too so I thought it might be a while. But I was called within a couple of minutes and taken to the back of a long lonely hallway and directed where to sit. I was right near a doorway to a closed off section for non-hospital staff. A couple of times personnel came and went from the room that I would be having my test, and I could hear voices inside, but I continued to sit in the hallway waiting to be called in. More than 15 minutes ticked by, many hospital staff passed by on breaks, others wheeling trolleys of things, a couple of other patients were directed into other "echo" rooms... Tick, tock, tick...

Finally, the door opened and another patient left and I was immediately called in. There were a lot of people crowded around in the room! Oh, perhaps they were that troop, of what appeared to be newly graduated Drs., that passed by while I was still in the large reception area as they had all headed down this same corridor. 

A young woman directed me to put my belongings in the little basket at the end of the table. A pillow was already set up in about the middle of the bed. I was to lay down with my knees bent and then positioned into place with the pillow somewhere between my lower neck and upper back, I'd guess. It was kind of uncomfortable on my neck to hold the position but no turning back at that point. The lights dimmed and the show was on the road! 

I'm taking a guess that the young female who preformed the test was a new graduate as there was a middle aged guy standing next to her giving advice. (There were no introductions made but I doubt this sort of test would be made by a technician so I'm guessing they were all Drs.) 

There was no generalized looking around of the thyroid this time, the ultrasound was immediately placed on the area of suspicion that would be tested today. The color Doppler ultrasound was switched on and I was doing my best to eyeball the screen. I could see them looking at the areas of vascularity and the middle aged man deciding that she should place the needle at a 45 degree angle.

Ready to begin, I was told not to swallow, speak, or move from this point on. Ok, a couple of quick nervous swallows and I signaled I was set to start. As the name suggests, I could feel a fine needle prick and pressure over the area. I was busy trying to avoid swallowing as that's about all you want to do when you know you can't! But I was also trying to count how long this would take as I'd been told a count of 10 last week by the endocrinologist. Well, I got to 10 and it wasn't over, then 20 and it wasn't over, maybe it was closer to 30 when it stopped. But I was fighting so hard not to swallow during it and then told: "Ok, finished, now we'll do the next spot". The second prick was over in a flash. But, I'm pretty sure I heard the young Dr. get flustered during it and say something along the lines in Japanese of "What should I do? Somebody tell me!". Hey, what was that all about??!! Next, she told me we'd take a short break and she retreated behind a curtained area where many other of the young Drs. had been standing. It was probably to check if there was enough fluid extracted in the sample because she came back very quickly and said that I was done. Oh, and as she was wiping me off, she said that some isojin (iodine) had been spilled on my shirt. I was cautioned not to do heavy sports or drink this evening. I can take a shower but not a deep-water bath. I'm to leave the bandage on until tomorrow. She told me to go home and just rest.

I stopped by the restroom to check out how I looked and to see the isojin spot on my fairly new blouse. It's one that I really like, too. It seemed to be back near the collar and not too noticeable luckily. But, it was then that I discovered the blouse doesn't have a top button so the bandaged area was very much visible to the random eye, so a little embarrassing to go out in public with.

(Took this photo moments after arriving home. Excuse the bad hair day!)

Although the test wasn't really painful, afterward it does feel a bit weird. I'd describe the sensation that keeps coming back every once in awhile as feeling like I got a karate chop to the windpipe. I wonder if I'll see bruising tomorrow?

A closer look at my blouse and the isojin (iodine) showed this stain on either side of the inside collar. Soaking it for a bit in warm water and some detergent at home later took it out, though.

Before I'd paid and left the hospital, another woman came along who seemed to have just had the same test as me. She also was sporting a bandage in the middle of her lower neck. I wanted to strike up a commiserative chat with her but Japanese don't really talk to strangers so I didn't. I wonder if we'll be seeing each other again...

As I waited in the accounting area, I couldn't help but notice a boy who probably wasn't much older than 15 or 16  who was with his mother and there to settle a bill at the end of a hospital stay. Well, I may or I may not have cancer. I'll know more in 9 days time what my future holds. I've already had cancer once and it was no where near as bad as people fear when they hear the C-word. I also have RA, it took a good decade to finally feel that it was under control. But it is and I'm doing things that I love and want to do. Oh, but what about this teenage boy I've just mentioned? From the looks of him, I'd guess that he left school when jr. high compulsory education finished. That's at age 15 in Japan. He probably went to work in a factory or some other sort of hard and dangerous manual work as that's about the only work open to a boy who leaves school too soon. So there he was, with his bags on a chair digging around for the paperwork to hand in at the counter. But, the thing I noticed about him first was that he was missing the tops of all of his fingers on his left hand, in a straight line across, down to the top joint or so. There were bandages over the tips, and possibly the pinkie was still intact. But what an awful fate for someone so young and with so many years ahead of them! I've seen horrific new hand injuries on a few other young boys here and each time I've guessed it must have happened during a factory job. It breaks my heart afresh each time, though. Anyway, I don't think I'll put him out of my mind soon. There's nothing like a hospital to make you realize that there is always somebody or a lot of somebodies that are dealing with far worse things than you are. For me today, it's a young boy who has had a serious accident resulting in multiple amputations. Last week, it was a waiting area adjacent to another waiting area of babies and young children with serious birth defects. Really what could be worse that an infant, small child, or young person suffering so much?

Fever

I obvious spent way too many hours in hospital waiting rooms last week. By Saturday afternoon I had a very sore throat and found myself blowing my nose frequently. Soon enough I discovered I was running a fever too. I stayed in bed all of Sunday. The fever was running around 38.8 C or so the whole day. blah.... At around 4 a.m. I got up to use the restroom and get a drink of water. My husband got up at the same time. He said he got a cramp in his leg which woke him up. I relieved my bladder and as I was getting a drink of water I started to feel dizzy. Bang! I collapsed, hitting my head on the door or the wall, not really sure which. I was so out of it that I actually thought I'd bumped my head against the headboard getting back into bed! My husband was close enough nearby to hear the crash. He's usually not the most sympathetic of souls. (Hey, if I was getting the emotional support that I needed from him I probably wouldn't need to resort to a blog!) But, this seemed to really shake him up. I do remember him saying something to me and me saying that I was ok and I just needed to find my blanket. Actually, my head was in the dirty clothes basket and he said water was all over the place from the plastic cup I dropped when I fell. I could hear him talking to himself and trying to figure out what to do while trying to get me up and out of that cramped little space. (My husband told me later that I actually fainted twice. He says that after he got me to sit up I then collapsed again. He says he was worried that the second time I actually had died.) Finally, he did get me moved to the bottom of the staircase and seated there while he went off to fetch some Pocari Sweat (re-hydration mix). I'm pretty sure he gave it to me in a glass measuring cup. He was probably in a panic and using what he could find. Then he helped me back upstairs and into bed. I was sweating up a storm too so he helped me change into a new pajama top.

Today, I canceled my plans and stayed home instead. The fever is down. I discovered a 6 or 7 cm bruise running down the back of my upper leg. Of course, I can't see the bump on the back of my head but I can sure feel it. Maybe tomorrow I'll be ok and all set for the fine needle biopsy on my thyroid nodule. 

I've been getting flu shots for many years now. I hadn't even had a cold in something like 7 years, if I'm remembering correctly. This year I've had 2 colds that I picked up from spending time with my young granddaughters and now this out of season flu. (My granddaughters are in kindergarten and daycare so being exposed to lots of germs.)

Note to self, the aches of joints and bones during a case of flu is nothing compared to how bad the pain is in RA. 

Dusting off the blog once again...

  
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.