Procrastination Abode
Welcome to my humble abode– imagine it to be a plastic igloo nestled in the calm of a snow storm’s aftermath. It is warm inside, and there are many shiny objects– things that are so breathtaking that one could stare at them for hours. Once the igloo’s curtain is pulled it is insulated… stocked with everything one could need- why would anyone ever need to leave?
But alas- it becomes clear- the studying must go on! I digress. I’ll leave you with my life at that point, and continue to my health-life.
I have begun the low iodine diet, again! And I have an appointment for Wednesday with the nuclear med folks at Kopfklinik here in HD. Since I will have been on the diet for a bit over a week, my treatment should follow a week after. Hopefully.
Today’s intake included:
-toast with plum butter and egg whites
-a mix of different potatoes (red, normal, and yams) baked with non-iodized salt, herbs, pepper, and garlic
Yesterday’s was:
-1 cup of dried (I cooked it after) spelt
-plum butter
-toast
-some homemade bratkartoffeln (similar to homefries)
In other news, I have two bruises wrapped around my lower legs– about the same height. I have to ask about that. It kind of makes me uncomfortable.
Oh, and check out the absurd tirade launched against me a few days ago on my December 9th post.
Leg show-and-tell: (I tried not to get my face in there… so excuse the awkward position)
Yes, I do have relatively bruised legs. I'm anemic. But WTF is with the bruises wrapping around my leg? I thought it was because of socks at first, but I don't wear high socks, and it's been there for 3 weeks now!
Scupdate:
It looks a bit irritated because it IS...
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Scupdate and then some…
Well, got my labs and things back from the doctor– and we have a TSH of 0.2, FT4 of 29.0, FT3 of 6.1, and a detectable Tg… cute! Somehow despite all of the good things with my TSH and T4, I still don’t feel great. I’m still extremely tired and just feeling generally hypo. Oh well– hopefully that’ll clear up soon.
Along with the lab results, I also got the recommendation letter to give to the nuclear medicine doctors in HD for my second therapy. The endocrinologist made it clear in his letter that he has high hopes for remission following this upcoming treatment– which would be great! Then just follow ups every 6 months!
Otherwise, things are going pretty well– studying for my physics exam that has been looming in front of me for the past 4 months, and going to the gym regularly. It’s hard to explain, but I think my body has become addicted to cardio workouts– it’s almost as if when I don’t go, I feel bad. I’ve been doing Tae Bo courses, as well as some stomach and back specific mini-courses… I also tried Kettelbells today– which, for those of you who have recently had thyroid surgery, really seem to strengthen the right neck muscles without making you feel like your head will fall off– I would highly recommend it! I will also try the sauna tomorrow, after my Tae Bo course. I can’t wait! I haven’t been in a sauna for about 5 months– and recently I’ve been afraid because of my heart. But I figure that if I was able to keep up in the Tae Bo courses for at least 2 in a row, my heart will withstand the heat- and hell, if I get a round of palpitations, I can always just leave and take a cold shower.
I have some pictures I took of my scar over the past few days:
January 13th-- some swelling can be seen.
I'm glowing, mother fucker! Well, not anymore, but soon again!
Scupdate from today!
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Tags: ablation, blog, blood, calcification, cancer, cancer treatment, carcinoma, cardio, chart, cold shower, diagnosis, doctor, doctor visit, endocrinologist, exercises, extrathyroidal invasion, faint blind, follicular cancer, follicular carcinoma, follow up, FT3, FT4, german protocol, hashimotos, HD, heart, heart palpitations, high risk, hospital isolation, hypo, hypothyroid, ibuprofen, incision, kettlebells, knife, l-thyroxin, lab results, left breast, legal level, levothyroxin, liver, low risk, lymph nodes, medical records, memory problems, mofo, neck, neck pain, nuclear medicine, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, physics, physics exam, pills, radiation, radioactive iodine, radiophobes, regiment, roommate, sauna, scar, scupdate, second round of radiation, stitches, stomac class, suspicious, swelling, synthroid, T1, T3, T4, tae bo, tear duct, Tg, therapy, Thyknife, thyroid, thyroid cancer, thyroid carcinoma, thyroid condition, thyroid surgery, thyroidectomy, thyroidectomy scar, thyroiditis, tired, total thyroidectomy, treatment, TSH, ultrasound, vials, vomit, weight gain, who are you
I’ve been holding off on posting for a while, just until I could get my thoughts more centered– I’m not sure how centered they are now, but, ey, fuck it!
So, here’s a little update on what’s been going on:
I had an appointment with my german endocrinologist last Tuesday. (Just a little background, I had been at his practice before, for my Hashimoto’s– once, last year but he hadn’t seen me, one of the other doctors had (I assume it was because I wasn’t “interesting” enough)- I wasn’t terribly impressed as they, too, just told me that they wanted to watch the tumor grow.)
I arrive at the doctor’s office a bit early (just to be safe), check in, pay the 10 euros, and sit down. As I’m sitting, people around me in the waiting room are just staring at the scar on my neck. Oddly enough, none of them had one!
After about 10 minutes, the doctor calls me in, and I realize that it’s the real guy this time (considered in Germany to be the endocrine-pope)! He escorts me into his office, we sit down, and he says “so you have a chronic thyroid disease, and you’re hypothyroid”. To which I responded, “yes, and I also have thyroid cancer”, pointing to my scar. He looks at me and says, “well, it doesn’t say that in your chart”… at which point I gave him my medical records that I had brought with me. He then spends a few minutes leafing through it, not reading it very well– he then comes to the part where it says what type of thyroid cancer, he writes it down and says, “well, you’re relatively low risk”. To which I responded, “that was a T3 tumor”. “No, you’re mistaken, that would be a huge tumor… you have T1”. I found this funny, because I am the patient and I’ve read/heard about my tumor before. I then showed him where it said on the pathology report that I had a T3 tumor. “Well, it must be wrong.” At which point I translated “extrathyroidal invasion” for him, and he said, “oh! Ok, that’s why it’s T3… well, ok, then you’re not low risk, you’re right.”
That was fun.
He then proceeded to ask me what I had done already with the cancer treatment (1 radioactive iodine treatment, attempted (but failed) TSH suppression, etc.). He then told me that the german protocol is that one has their ablation dosage of treatment, and then, 3 months later, one undergoes a second radiation therapy which also doubles as contrast for the scan after the second therapy. I had my ablation on October 28th (or so–give or take a day or two), which would make me due on the 28th of January. He took about 12 vials of blood, and said that if my Thyroglobulin is “ok” I can wait until the end of the semester. In the mean time, the university has offered to work with me on this, whether I have to do the radiation on the 28th of January, or whether I can wait a bit. Unfortunately, Germans are radiophobes. This means that all thyroid cancer patients who receive radioactive iodine must do it isolated in the hospital. They put a geiger counter to you regularly and when the number is low enough (legal level), you can go home. For me, if I have uptake from the iodine, I will be facing about 2 week in the hospital– no visitors, nothing. (I’ve heard that there’s a possibility that one gets a roommate for the radiation… can you imagine? Being locked in a room with someone you don’t know for 2 weeks straight?!)
Mr. endocrinepope then asked me how I was feeling on my current L-Thyroxin dose (synthroid)- I responded that I wasn’t feeling very well… I was very tired, progressively gaining weight, having some memory problems, etc. He then said, well, you’re not hypothyroid, so move around a bit more, get more fresh air. To which I responded, “I do exercise regularly- I am vegetarian, and I eat healthily. My t4 is undoubtedly not in normal range, and my TSH is skyrocketing.” He said that was impossible with the amount of L-Thyroxin I was on. We’ll see when the tests get back, but mr. pope owes me an apology, I believe.
He also did an ultrasound and said he didn’t really see much thyroid tissue remaining, and although my lymph nodes are indeed swollen, they don’t look suspicious.
I will pick up my medical records (which he wanted to read through at his own leisure) and a letter of how he wishes to proceed with my care in a week.
Otherwise, I haven’t been doing amazingly well thy-wise. I’ve had a lot of pain from salivary gland swelling, tear duct scarring (actually, sometimes I cant get any tears to come out on my left eye which with this weather and wind hurts a lot!), the incision, from my lymph nodes (extending from my jaw down past my left breast), and some neck pain. I have some pretty heavy duty pain meds for it, but I don’t really like them. I need something that is both strong enough to kill the pain, but also non-narcotic so that I don’t feel like I’m sliding around everywhere.
I was also given some new medicine which made me violently sick– I spent many delirious hours vomiting bile and anti-nausea drugs.
In other news, I’ve been going to the gym lately- I’ve attended a Tae Bo course and a stomach-focused course. Both of which I think are absolutely great! Medically speaking, the Tae Bo course really didn’t mix very well with my heart, and I went “faint blind”, which for me manifests itself by complete blindness where all I see is bright white light. I needed to sit down for a while, let my heart slow down a bit and my brain get more oxygen… and I actually continued with the course, albeit a bit modified. The stomach class was great– medically speaking, though, there were a lot of exercises for which one had to hold one’s head up without any support– I lasted for about two repetitions, then my neck gave out.
I intend to continue with these classes though! They are excellent for my body.
Scupdate to come later this week.
Merry snow-creature-making! (even if you’re not, you should!) I’m going to make a snow thyroid (snowroid)!
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Tags: ablation, blog, blood, calcification, cancer, cancer treatment, carcinoma, cardio, chart, diagnosis, doctor, doctor visit, endocrinologist, exercises, extrathyroidal invasion, faint blind, follicular cancer, follicular carcinoma, german protocol, hashimotos, high risk, hospital isolation, hypothyroid, ibuprofen, incision, knife, l-thyroxin, left breast, legal level, levothyroxin, liver, low risk, lymph nodes, medical records, memory problems, mofo, neck, neck pain, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, pills, radiation, radioactive iodine, radiophobes, regiment, roommate, scar, scupdate, second round of radiation, stitches, stomac class, suspicious, swelling, synthroid, T1, T3, T4, tae bo, tear duct, therapy, Thyknife, thyroid, thyroid cancer, thyroid carcinoma, thyroid condition, thyroidectomy, thyroidectomy scar, thyroiditis, tired, total thyroidectomy, TSH, ultrasound, vials, vomit, weight gain, who are you
Slicing my Gland
I wrote a letter to my thyroid and it was published by DearThyroid earlier today. Take a look!
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Tags: ablation, blog, calcification, cancer, carcinoma, Dear Thyroid, DearThyroid, decade, diagnosis, doctor, endocrinologist, follicular cancer, follicular carcinoma, happy new year, hashimotos, hypothyroid, ibuprofen, knife, letter, letter to thyroid, liver, mofo, momentous, neck, new decade, new year, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, pills, published, regiment, scar, slicing my gland, standard of care, stitches, swelling, Thyknife, thyroid, thyroid cancer, thyroid carcinoma, thyroid condition, thyroid patients, thyroidectomy, thyroidectomy scar, thyroiditis, total thyroidectomy, TSH, who are you
New Year, New Decade
Happy New Year! I hope this one will be soooooooooooo much better than last– for everyone.
I hope that the new year will be a cancer-free one, spent with a good TSH range, and minimal health problems!
This commencement of a decade rises in my mind, something that will happen within this decade, something momentous and life changing (hopefully not just for me), and that is, that by the end of this decade, I’ll be a doctor. I’ll be able to help fellow thyroid patients and give them the care they deserve… not the poor current standard.
Well, last night’s festivities left me with a couch and a computer that have a pretty strong wine smell and some empty bowls- I’m off to bring the apartment back into shape.
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Tags: ablation, blog, bowls, calcification, cancer, carcinoma, computer, couch, decade, diagnosis, doctor, endocrinologist, follicular cancer, follicular carcinoma, happy new year, hashimotos, hypothyroid, ibuprofen, knife, liver, mofo, momentous, neck, new decade, new year, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, pills, regiment, scar, standard of care, stitches, swelling, Thyknife, thyroid, thyroid cancer, thyroid carcinoma, thyroid condition, thyroid patients, thyroidectomy, thyroidectomy scar, thyroiditis, total thyroidectomy, TSH, who are you, wine
Thyoliday Blues & Truths
Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?
Questions:
1) Have the holidays and your experience of them changed since you’ve been diagnosed?
It has been less than a year since my diagnosis, but of course it came in time for the holidays. Thanksgiving and the festivities surrounding it were extra special because some of my relatives thought I might not make it for the next couple of holidays and that they wanted to come after this traumatic bushel, so they thought they ought to come in to see me. We had more than 20 people at our table. I found that this year, the discussion wasn’t focused on me, but all of the eyes were. Everyone looked at me while discussing other matters—as if to check and see if I were still alive.
During the other holiday season, I was back “home” in Germany, and with the other side of my family—I found that after the children were dismissed from the table, the questions began, but otherwise there was really no difference.
2) What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)
My favorite holiday dishes from childhood are mashed potatoes (with the skins) and cranberry sauce. They remain my favorites—and luckily I got done with my low iodine diet before Thanksgiving, so that I could indulge in both.
3) Off the top of your head, is there one comment from friends or family that sticks out in your mind as a what-were-they-thinking kind of thing that brought your disease front and center for everyone at the holiday function to hear about?
At a university holiday party in Heidelberg a professor of mine said, “Wow, your haircut is really horrible”. To which I responded “radiation, hormones”. He then continued to make a big fuss about it until he finally listened to me and then asked “well, what does that have to do with your hair”—I then said “I have cancer.” He looked at me shocked (but I am aware that the administration in the medical program definitely had told him) and I added, “the hormone imbalance makes me lose lots of hair, and the doctor suggested I just cut it super short so that when they fall out, they’ll match coming back in”. Most of my classmates were standing around to witness the event, which made it super awkward for those who didn’t know why I had been gone for the past two months.
4) How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?
Because my TSH has yet to be regulated, I have the nice effects of a rapid increase in L-thyroxin (Synthroid) dosage. When I get upset or stressed I get heart palpitations. So I’ve tried to take the most stressful moments with humor—although it makes me look funny, sitting there while everyone else is screaming at each other, laughing, it has kept any medical professionals from needing to use paddles.
5) Do you feel the need to enlighten and educate your loved ones about your disease when you get together for holidays, as people are often curious about our illnesses? If so, how do you educate them?
I do not usually feel the need to enlighten or educate those around me during holiday get-togethers—mainly because I don’t feel like scaring any of them. As is, my nuclear family is on a need to know basis about my thyroid cancer—they have yet to understand the magnitude of a stage 3 tumor and the ridiculousness that I only had 3 lymph nodes removed. If they knew this, though, I promise they would be either be inconsolable with complete confusion, in disbelief, or just be plain super upset.
6) Has your disease ever showed up at the wrong time on a holiday and ruined the day or moment?
No, not really… during Thanksgiving, my neck muscles were in their ripest stage following the surgery and sometimes they’d just give out and my head would plop to the side—in order to prevent such an occurrence or related injuries, I wore one of those neck pillows that looks like a toilet seat. I decided not to wear my pillow that evening, and just as I was engaged in conversation with my aunt, my neck gave a bit. It was awkward, and then I had a few complaints of various pains (these I would ordinarily expect to be ignored)… I have a feeling that that really pushed my disease to the forefront and gave my family a bit of a spank-in-the-ass reminder that I was “sick”.
7) Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?
I have and did, it was a hate letter to my thyroid and will be published in the beginning of January.
8) If you could tell the world one thing about thyroid disease (or thyroid cancer) that you feel they don’t understand, what would it be?
It isn’t all the same. I loathe hearing people say, “Oh yeah, my friend had that, but she’s just fine now.” Or “Yes, I knew someone who had that, and it was hard in the beginning, but once she got over it, she was fine for life.” That makes me boil inside, the problem is, though, I know that they’re trying to relate to me or console me, so I don’t lash out at them (despite the extreme urge) and explain that everyone’s body works differently, and living without a thyroid is different from living with out a thyroid because you had thyroid cancer, etc.
9) What is the greatest misconception regarding thyroid disease and thyroid cancer?
That it’s curable and can be easily fixed by a simple pill once a day. I wish this misconception would stop being propagated by websites and unknowing doctors. If you’ve found a way to cure cancer, you better go tell someone ‘cause you’ll get a fucking Nobel Prize for that—until then, stop telling me that I can be “cured” (my Thyroglobulin is still detectable… and I don’t see it going away any time soon, despite the radiation treatment went through).
10) What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?
The stupidest thing someone has said to me was probably the day of my diagnosis, after I had received the phone call, I arrived at my parent’s house crying, and I told my mother, at which point she started yelling at me, asking me for a “term to google” and I told her “papillary-follicular thyroid cancer”… two minutes later she ran out of her office and screamed “I don’t know what you’re so upset about, it’s curable!”
Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.
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Funny.
Today is funny… not funny good or funny bad– but just funny. I went to bed a bit before 1am last night, and woke up around 4am in a really bad night sweat, only to realize that I had a fever and that it took all of the energy my recent sleep had collected, to sit myself up. I had some water, and couldn’t really hold my body up much more, so I let myself sink back into bed. A few hours later I woke up to a nightmare which I now only vaguely remember… but it had something to do with my new apartment and my relatives who live in the USA. It was, to say the least, a nonsense dream.
I then decided that, although I hadn’t slept to my goal hour in the morning, I would just lounge about in bed until then. As I rolled over to check my emails I saw another (of a recent series) cold, daunting email from my ex. I finally picked myself back up to write an upset email back to him, went outside for some fresh air, and told myself that I am better than this. I came back inside, tried to distract myself by reading what I thought was a book of humor, but it turns out, only some of the quotes are humorous! I showered, made myself some food (first time using the stove here!!! It was awesome! Heated up really fast and everything!), and sat down to work. And as I began, I heard a loud explosion, and looked out the window to see a very fat cat sitting on my window sill. It was bizarre. I have yet to understand what the explosion was, and I believe the fat cat belongs to my landlord. Anyway, what relates my morning to my thyroid is that with every step of this morning, my neck has had a different pain. It’s bizarre. Not to mention my body’s neutrophils being super pissed off at the radiation and giving me these fevers and weakness.
I’m heading off to Hamburg tomorrow, so I suspect this might be my last post before the Thyoliday Blues and Truths post on the 28th!
Stay tuned!
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Scupdate as promised!
Exactly 3 Months Post-Op
Also, I noticed that that little speck next to my scar, on the right hand side on the picture, is actually where the end of my stitches is… it’s where there was a wee thinger hanging out while the tape was on it… and probably the reason for my thyknife! Anyway, just an observation!
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Tags: ablation, blog, calcification, cancer, carcinoma, diagnosis, endocrinologist, follicular cancer, follicular carcinoma, hashimotos, hypothyroid, ibuprofen, knife, liver, mofo, neck, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, pills, regiment, scar, stitches, swelling, Thyknife, thyroid, thyroid cancer, thyroid carcinoma, thyroid condition, thyroidectomy, thyroidectomy scar, thyroiditis, total thyroidectomy, TSH, who are you
Dude Where's My Thyroid? 