Abnormal
I’m sorry again that it has been so long since I’ve posted!
Since my last post, I have had 2 more operations- both left sided revisions- although the last was mainly to remove the old scar tissue.
I’ve had lots of ups and downs in the last few months and have wanted to post, but didn’t really feel ready to.
The last few weeks I’ve be pretty upset about how doctors view me. I’ve had four operations on my neck- and with every operation, they cut out the old scar and sew the skin together… and every time that happens the skin gets tighter and the tension on my whole neck greater. The doctors only see me as a theoretical person, not as a person with needs, emotions, and a life. Following the last operation I was told I shouldn’t look to the right so that the scar could heal nicely. This isn’t as simple as I initially thought and it actually crimped my style a lot (but of course that doesn’t concern the doctors). Not only do I look like robocop but I can’t drive, bike, do any sports, carry anything heavier than 5kg, and I have to consider where I park my bottom so that I can always look to the left. Of course on top of that, I have a large red/pink scar (the first 2-3 weeks I had lovely attention-calling steristrips). I stand out.
Standing out didn’t bother me before- but I’ve passed my 2 year anniversary with my diagnosis and am starting to get impatient.
It seems to me that Germans enjoy staring, where Americans are more forthcoming and ask me what happened. How do I tell them that I have cancer, but still not bring them down? Or wait, should I even be worried that my diagnosis makes others uncomfortable? After the big question was posed and I have answered, I’m always asked, “but everything’s ok now, right?”. Well no, actually. Either I get very pitiful looks, or the people decide they want to get to know me past my scar. It’s ok- I know I have a big scar, but I wish that more people could see past it.
My scar used to help me to talk about my cancer- but with the more operations I’ve had, the reactions I get remind me more of my pain, than free me from it. Three operations ago, I had a small scar and little to tell; two operations ago, I had a large scar and a bit more to tell than after the first one; one operation ago, I had even more to tell, and now, after my fourth operation, I have too much to tell. Talking about it helps me normalize it, but when people hear that I’ve had four operations and multiple radiations, they just look at me with such pity that I am reminded of how abnormal it is for someone my age to be in my situation.
I’ve tried scarves, but at some point the scarf has to come off- and hiding my neck feels like trying to fit in, only, I didn’t change my wardrobe… I guess my neck has shaped who I am now- two years after my diagnosis- and maybe that isn’t so bad after all.
Well, enough ranting. Here are some pictures of my scar’s progress:
one day post-op (3rd operation)
1.5 weeks post-op (4th operation)
3.5 weeks post-op (4th operation)
5 weeks post-op (4th operation)
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Well, lots happened in the past few months! Some good, some bad– but to recapture everything that’s happened in those months would be impossible and unbearable. ;-D So I’ll fill you in as I go– in the following posts.
I am in the middle of my semester (yay not pausing medical school!) and dealing with exams and what not– but unfortunately also some really low counts. My red blood cells are pretty depleted and tiny, my whites aren’t doing really great as well– and I’ve got a fever. I started a new medication for cancer patients with non-iron-related anemia but it’s been making me pretty sick– lots of throwing up and weakness. We’re working on that!
The Physicist is doing pretty well as well– both have a lot of stress– and he’s been helping me in physics and convincing me that I’m just fine, even though I have low counts. ;-D
I’m going to keep this post a bit short because I have a lot of chemistry to do for tomorrow- but I promise to post some new pictures (oh no! I’ve gained some hypothyroid weight!) soon!
Until then!!!
Hungry
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A month’s space.
It’s been another post-less month. Although I often dream about my blog, and my readers, somehow my dreaming doesn’t become reality.
I don’t really know what it is that I’ve been doing recently that eats up so much time. For some reason I don’t have time to write good friends and answer emails and talk to others.
I often get up around 9am, take my medications and go back to bed for another few hours. I’ve been sleeping the most that I have in my life, yet I am still completely exhausted– not just the sleepy groginess that one has if one sleeps too much, rather the extreme body-weakening exhaustion that needs a rest.
Well, I’ve just reached another one of those points, and perhaps this time it’s because it’s quarter to 2 in the morning.
I promise a new update with pictures and what have you soon!
Good night from my side of the world!
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Well hello all! I’m sorry it’s been a while since my last post. I am alive (which shocked me a bit when I woke up from the surgery, to be completely honest!).
Surgery went “well”– 600g (1.32lb) were removed from my neck during the radically converted neck dissection. I am now missing half of a salivary gland, a muscle, a nerve, my internal jugular vein, 30+ lymph nodes, and my neck fat. Pairing with my new losses is also a loss of sensation from my scar up to my chin/jaw, and an extremely sensitive painful spot on the right side of my chest. My right shoulder is also extremely offended by the operation and is excruciatingly painful. My neck swelling has finally gone down a bit– although it’s not yet 100% normal.
Anyway, the day of the surgery went pretty much like this: we (H. and I) got up at 5am, showered, dressed, did some last minute packing and boarded a bus to the hospital. We arrived a few minutes before 7am, when I was to be expected. In Germany, one shows up at the station/unit at which one will be treated after the OP, when one arrives at the hospital. A bit concerning was that when I arrived, all of the beds were full, and a man was on a gurney in the hallway with a room divider acting as the walls to his “room”. I was reassured that patients would be released before I got out of surgery, and went on my merry way into the multipurpose room to change into my “disposable underwear”, surgery leggings, and gown all of which were provided to me by the hospital.
Another two friends also arrived at the hospital, making my waiting group 3. They joined me on my OP-gurney and we talked for about an hour, when we began to ask why I hadn’t been taken down to the OR. We then saw that my surgeon was wandering around doing last minute rounds. He approached me and briefed us on what his plan was, at which point I gave my own 2 cents and made it clear that my health comes before cosmetics and that he by all means had my affirmation to cut as much as he needed to. I then received a Xanax and was wheeled down to the pre-OR rooms in which I was greeted by anesthesiologists and nurses who opened my gown, put my on the operating table, and gave me my drugs. They placed a line in my hand, which made me fuss a bit because those always hurt the most. But soon they had given me the drugs to put me under and I began to feel my diaphragm and lungs stopping. That’s my cut off point. Next thing I remember is being on a gurney more than likely still in the OR, and waking up with a tube down my throat. Being a medical student, this really scared me shitless because I couldn’t quite decipher between whether I was still in the OR or whether I was in the ICU and of course my first reaction was, why can’t I breathe on my own?. Tube was pulled and the next thing I remember is me waking up in the recovery room, being asked if I had pain, and saying that I did have quite a bit of pain, but that I didn’t want to be knocked out again. They then gave me a bit of morphine and about a half hour later I was asking for some water, a bathroom, and to see my friends. Back in my more conscious state, I was able to look at the clock on the wall and realize that I had been wheeled down to surgery at 9:30am and it was then 1:30pm. Another minor shock- the operation was supposed to be between 1.5-3 hours. Mine was four?!
About an hour and a half after first waking up “for good” in the recovery room, I was wheeled into my room on the ENT floor. First thing to be noticed were two drainage tubes and a large bandage across my neck as for me not to be able to see the scar and of course for sterility purposes. My neck swelling was immense.
As expected, I had lost quite a bit of blood during the operation and wasn’t feeling too amazing when I returned to my room. The nurses had to play with some medications for me until I regained a comfortable operating state. From then on, it was just a lot of pain, lack of movement range, nausea, and swelling.
I’m 3 weeks out as of this past Friday and consider myself to be doing pretty well, all things considered. Emotionally, the whole new cancer junk has taken a bit of a toll on me. I don’t want to be sick and I don’t want to think of myself as being sick. But it is so immensely hard not to when you are. Initially, after the operation, I had to get used to my scar. Something I found to be harder than I thought it would be. I am so young and I have a gash across my neck, from ear to ear. Everyone has an idea of how they look because they’ve seen themselves in the mirror so often. And this image of oneself changes of course, as one ages, but one sees it along the way- so the subtle changes over the years become less noticeable unless compared with an older photo. For me, I went from a young woman with no “battle wounds” to a young woman with a small scar across her neck, indicative of a thyroid operation, but not screaming cancer, and then to a young woman with a scar reaching ear to ear screaming and bellowing that I had a health problem. To those in the medical field it’s a clear sign of head or neck cancer, to those not in the field, it raises uncertainty, a sense of unattractiveness, and many crude questions.
I initially wore a scarf wherever I went, although it was uncomfortable for the material to rub against my skin, but now I have stopped. I now see myself with my scar when I envision myself. My scar is a part of me- and it’s not meant to be hidden. But at the same time, for fuck’s sake, I am so young, and I don’t always want to be so different.
Ok, well perhaps I am a bit frustrated. But I really just want to be treated as a normal person, go back to the things that normal people do, and feel what normal people feel.
I have another radioactive iodine treatment on Tuesday, for which I will need to check into a hospital again for a few days, and that’s about it that’s new.
I’ll try to do another update while I’m in the hospital this week, but until then, some progress update pictures:
from April 30th 2010, pre-neck dissection
Laying on the gurney waiting to be taken off to surgery.
just wheeled into my room 1/3
just wheeled into my room 2/3
just wheeled into my room 3/3
day after the surgery 1/3
me and my drains- one day after the surgery 2/3
day after surgery 3/3
four days post-op 1/2
four days post-op
two weeks post-op
two weeks and five days post-op
two weeks and five days post-op, front view
two weeks and five days post-op
two weeks and five days post-op
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Tags: ablation, anaplastic thyroid cancer, bilateral radical neck dissection, blog, blood, calcification, cancer, cancer treatment, carcinoma, cardio, chart, cold shower, dedifferentiated thyroid cancer, diagnosis, doctor, doctor visit, endocrinologist, exercises, extrathyroidal invasion, faint blind, follicular cancer, follicular carcinoma, follow up, FT3, FT4, german protocol, grandfather, hashimotos, HD, head and neck cancer, heart, heart palpitations, high risk, hospital isolation, hypo, hypothyroid, ibuprofen, incision, internal jugular vein, kettlebells, knife, l-thyroxin, lab results, left breast, legal level, levothyroxin, liver, low risk, lump, lung cancer, lymph nodes, medical records, memory problems, mofo, neck, neck dissectoin, neck pain, nuclear medicine, operation, pain, papillary cancer, papillary carcinoma, papillary follicular cancer, papillary follicular carcinoma, physics, physics exam, pills, radiation, radioactive iodine, radiophobes, regiment, roommate, salivary gland, 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
Big Things
I have some monumental things coming up– first off, a big operation. Bilateral neck dissection with possible radical conversion– it even sounds big… MASSIVE. And then with it, a rather large scar. And with the whole thing, a huge new bundle of medical woes.
I went to the doctor this Monday about the lump on my neck, and she sent me along to a surgeon at the hospital, who in turn did my umpteenth ultrasound only to then tell me that I have two tumors on the left side of my jaw, and one on the right side as well as some suspicious masses on my neck that weren’t previously discovered. I was a bit shocked. I then met with another doctor who looked at me with such a sad, pitying face and told me that the cells in my neck weren’t absorbing iodine which I had already known- but she had assumed I hadn’t. It was momentous, because the severity of the situation was finally able to shine through- most powerfully, to me.
I am tired. I am very very tired. Running around to different doctors, constant blood draining, ultrasounds, being told I can’t be helped, being told on a Monday morning that I have a surgery scheduled for Friday morning. I’ve also grown weary of bringing bad news to people- holding information from my family an ocean away- trying not to feel sick, although I know my body is. I think that most cancer patients feel this way– especially when things don’t move along fast enough. But regardless, it sucks.
I’ll be doing the operation without my family at my side- which allows me to relax at least a little bit and not worry every second about what my family knows and doesn’t know and how they see me. I think in this sense, it’s better to be surrounded by friends. There’s a twitter feed that will be tweeted with updates on the surgery as it goes on, anyone who would like the link, please email me (hungryfortsh@gmail.com).
Well, ya’ll, I want to make this post a bit humorous, but for whatever reason, I can’t bring myself to crack a joke right now– which is funny, because I’ve had a good attitude about things and still do- but still. Oh well- an update with photos and what not will come soon! New scar and all!
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Tags: bilateral neck dissection, bilateral radical neck dissection, neck dissection, radical neck dissection
Lab Update
Just a brief lab update, as I finally received my most recent labs this afternoon! They’re from the 7th of April, but still the newest I’ve got! TSH is 0,0!!!!! Great! Finally properly suppressed. FT4 is 30, which is pretty high, but ok considering the TSH suppression and would also explain the higher frequency of heart palpitations… FT3 is 6,2 which is on the high end of normal. My CEA (Carcinoembryonic antigen) is slightly elevated- Tg hasn’t budged, Parathyroid Hormones are doing well in normal range, calcium levels are actually a bit high, which is fine. And my kidneys seem to be pumping well and in range. Yep— thathathathathathat’s all folks!
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I can’t decide how to refer to the lump on my neck… I’m so tempted to use a humpty dumpty reference– lumpty dumpty or something… but yet so close to using a Big Fat Greek Wedding reference and calling it my twin, which I ate in the womb. I think lumpty dumpty sounds a bit less crazy. Well, nonetheless, lumpty dumpty/twin is steadily growing much to my dismay. I’ve seen two doctors about it, both my endo and my PCP… PCP was quite adamant about getting it removed, whereas mr. coolendo told me to come back if it grew more– but of course, I needed to have made an appointment with him something like three years ago in order to be seen in the next 6 weeks. Sometimes I love the system here. I am going doctor hunting– I need a competent surgeon who will be able to leave my carotid intact as well as the majority of my vital muscles, and this surgery is quite specific and rare. I think I’ll be traveling from my doctor-rich area of Heidelberg to Karlsruhe some time this week to check out a few doctors there- and possibly if all else fails, to see a specialist in Hamburg.
All of you thyca patients reading this, don’t be shy to advocate for yourself- it’s the best thing you can do. I’ve started to get tired of the back and forth and 10 euros and doctor referrals but it’s my life- I’d prefer more quality and quantity than letting myself fall asleep on this.
Ah! And my blood work came back! My TSH is still a wee bit too high (0.04- should be 0.02), Tg (tumor marker) is still detectable (thanks cells hanging out in my neck/chest! love you too!), T3 is within range, T4 is a tad bit high, but to be expected with my dose of l-thyroxin, and the special great part of the labs– my TgAB (tumor marker antibodies) has started to rise! Awesome! This is great, because I won’t be able to be followed with the stupid tumor marker anymore, since my body is starting to mess with it! The best part is, that this means that I will probably have to have whole body CTs or radioactive iodine scans every 6-12 months because they won’t be able to know otherwise if there is a recurrence. Sweetness! But I’m all about waiting for the antibodies to reach their critical mass before dealing with the frequent inconveniences.
In other news, I found the book The Last Lecture sitting around my desk this afternoon and began to read it– although I haven’t really read anything non-university related in ages, I seem quite intrigued… any of you survivors read it? Ironically enough, my copy was given to me as a graduation gift two years ago when it came out and it’s been hanging around my various abodes for the a while.
Well, I am off to continue some procrastination and hopefully indulge in some awesome jaw-pain-free sleep tonight (yeah right!)!
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Been bad again–
Another month has past, and I have still very little to write. No, that’s not true. So much, but so little courage to do so!
Well, a few things have drastically changed in my life: first off, I’ve become much more aware of my iodine intake- my goal for the next few months is to really whip my body into shape, that those nasty cells don’t stand a chance of building new offspring of their kind. I desperately want to hear that I am in remission, and be done with the “cancer chapter” of my life. I would love to move on to the “future” part of my life, within which I finish my medical studies, make a life for myself, settle, and have an interesting, involved, happy life.
Another point, is that I’ve become more active as far as my social life goes- going to bars, dancing, and enjoying myself purely. Feeling free. I seem to have skipped that part of my life the past few years, and it’s nice to “be free”. This term of free-ness is not easy to explain, it’s the ability to breathe, to know that one can manage one’s time properly and not have to worry about everything all at once. I think, I actually have my cancer to thank for that- (thanks douche-faced cells!) in that I had to give up a huge part of my life, my feeling of control. I can’t control my body anymore– or at least the stupid things my cells do- nor can I really control other aspects of my life that relate to it. With giving up this control battle, I’ve also loosened up and learned to “live”.
Medically speaking, nothing much has happened. I am awaiting my lab results from the 19th of March– due to come Wednesday or Thursday. I will also begin again with the low iodine diet in the beginning of May- which shouldn’t be too much of a change up from my current eating habits– of course, with the exception of eating food at restaurants or at friends’ houses!
On a rather unrelated subject, I had a dream about my grandfather last night- it was actually a nightmare. I don’t really remember the exact circumstances leading up to this point in the dream, but I think I was walking with a group of people on the street and my grandparents or just my grandfather was behind us- I was looking occasionally to see if they were alright, and I looked behind me only to see my grandfather laying on the ground on his side in the middle of the road! I then ran to him, brought him to the curb, asked him to sit down, and proceeded to give him something similar to an Emergency Room examination. There were also children playing loudly with soccer balls around us- the balls kept coming our way and I lost it with the kids at a point, then returned to attend to my grandfather.
For months I’ve hoped to dream of my grandfather, to interact with him again in the world of my imagination- but this dream put me a bit off of that hope. It takes a lot of strain to remember the times when he wasn’t ill, and when we would just be together. Perhaps because there aren’t many things in my life that remind me of it- but the boldest memories are definitely of his last year.
One night, about a month before he died, my parents received a phone call at 2am, asking for us to come over to my grandparents’ house to help my grandfather get up. He had sat down on the toilet and not been able to rise again. (On a sweet note, because my grandmother and grandfather had never seen each other on the toilet before, he refused her help while he was still sitting on the seat.) He then very carefully made his way onto the bathroom floor, sitting cross-legged on the carpet, and then called his wife in. My father and I entered at this point, hoisted him gently up, and brought him back to bed.
I recently went on vacation with my grandmother, and we had a lot of time to talk about some of the funny moments we had with my grandfather during his radiation treatments. It was beautiful in a way because he’s almost been gone for 6 years- and talking about him with my family, those who really knew him, has become somewhat taboo- something that seems to just sadden them. It’s tragic, in a way, because of what a wonderful influence he was on my life (and at the risk of speaking for my other family members, on theirs as well), and what fantastic memories I have with him.
Well, it’s a bit late, and I ought to do some more studying before I go to bed! But I can offer some scupdate stuff– in the pictures, on the left side of my neck, there’s a lump– I just noticed it really, but will have it checked out immediately.
Scupdate April 5th 2010
Scupdate April 5th 2010, questionable lump
Better View of Lump-- April 5th 2010
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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, grandfather, 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, lump, lung cancer, 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
Quick Update
Sorry I’ve been absent recently! I actually made another vlog, but the sound didn’t work and I didn’t have the time to re-record the video.
Things have been going alright, I have been home for a while, recovering. This round of treatment has been giving me more trouble than the first. I’ve had some extreme stomach trouble– vomiting almost every morning before eating anything, and all day my stomach is just extremely temperamental. The past few days my tear ducts have stopped working– so, although my eyes are minimally moist by nature, no extra tears have been coming to the rescue! It’s extremely painful, especially when something gets into them.
I’m going to see the doctor on the 19th when I get my levels checked, and at that point I’ll ask about what I can do about my stupid tear ducts. Although, I’m not sure I’d be willing to try surgery. We’ll see.
I’ll be going in for a mini-treatment in May so that I can get scanned properly, but with I-131, so this will entail another week off.
In non-health related news, there’s some exciting stuff coming up, my birthday is tomorrow, and I’m heading to Portugal on the 22nd of March.
Mr. Asshole is still being an ass, and even more than just an ass. Which makes things nice, of course. But I’m pretty sure I’m in a good spot here, so, Mr. Asshole can go fuck himself- big time.
I’ve been thinking a lot about the “what if” question lately– and also about what is going to happen. Every day it gets a bit harder to breathe- which I am sure is just secondary to the treatment working and the inflammation that comes with it. But still. It’s a bit disconcerting. Uncomfortable, to say the least- especially when trying to focus on my future a bit farther down the road.
I’ve decided that after May, if nothing’s gotten too big or bad or anything, that I will hold off on any other radiation treatments for another 8-12 months so that I can freeze my eggs. I’m afraid that the treatments/mini-treatments will effect my fertility earlier rather than later- considering my family’s early-menopausal tendencies.
Well, I’ll post my promised (mostly via youtube) vlog before I head to Portugal!
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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
Dude Where's My Thyroid? 