How to survive post-RAI (radioactive iodine treatment) era

To be honest, I don't remember when exactly I had the RAI. 2010..? 2011? No, maybe it was in 2012.

Memories fade and I don't remember every single detail. I do remember some though: feeling sick to my stomach, taking three showers, because I felt I had to scrub the iodine out of my body. I drank a lot of water. I remember the plastic zip-lock bag, where my iPhone, the only link to the outside world, was sealed in.
I remember the nursing staff leaving my food tray outside the room and I didn't know it was waiting for me there. Needless to say, I was pissed off with that.

Now, years later, I've suffered from tooth decay and cavities, which I've never had before the RAI. I've looked after my teeth very very well all my life, visited the dentist, dental hygienist etc.  To my horror the dentist in Dubai last year discovered a cavity, the first ever and I'm close to 40 years! I wasn't supposed to have cavities or any sort of dental issues.
I'm convinced it was the RAI that changed something in my saliva... or did some other kind of damage.

I don't know what else it did to my body, but the teeth: please look after them. Make sure you do it even better than before and visit your dentist and the dental hygienist. Ask about dental hygiene before and after the RAI. Even better, keep a notebook with you and write your RAI doctors' and nurses instructions there in a language you understand.
I don't remember anyone mentioning dental issues, but if they did, it's long forgotten.

Eat well, sleep well, even after years from RAI.

Try to attend the follow-up appointments, so you are not left in the dark.
I made a decision not to have more scans, endocrine appointments, oncology appointments etc. My primary care doctor monitors the thyroid function tests and we are okay with that... but I am planning to ask for an appointment for endocrine follow-up next time I see my GP. Years pass by and even my conscious decisions and opinions change.

By the way, if you think counseling would help you post-RAI, please please get a referral. It has helped me tremendously. So many emotions surface just after RAI and it's so helpful to talk things through with someone.

Back to the past.. for a moment

View from the Four Seasons hotel in Riyadh. The hotel is pretty awesome and amazing views certainly prove it. New high rise buildings have appeared in the horizon. Of course the first thing I was searching for was The Hospital. I know where it is, but could not see it. Not at night, not in the morning. Could the hospital have vanished without a trace....? That would have been the very best option.

But no. Next morning I found myself sitting in a taxi driving toward The Hospital. I hate seeing it and nothing in or outside that hospital structure provides any comfort. My one and only task was to find the outpatient building (ok, same location, same floor, same room), see the doctor (nice to see ya... not), book the next appointment (AWWWW NO NOT ANOTHER ONE). Can we check your height and weight? NO. Blood pressure? Sure. 155/91 (I really and truly hate this place). Do you have fever? No. 36.7 C (despite of the fact that it was well above +40 C outside and I was boiling with heat and anger and disgust and fear). They probably will now document in the file that "patient was not cooperative". Go ahead, document what you want.

End result is that I will need to return to The Hospital in October. They want to do the final thyroid whole body scan. If it was just the cutting edge scan and no blood tests, no time wasting doctor's appointments, I'd probably be ok. The fact is that it's all inclusive, all comes in one package, same price for all. Once again, they will document that patient was reluctant to co-operate. I get it that they are trying to help me, but they too could be little more understanding and kind. I get it that it's a hospital and some people think working in hospital gives you the right to treat patients like dirt. Definitely not inform them of any delays. Definitely delay them even more if you can. Add to that being relentlessly rude and patronizing. Not all staff do that at all, of course. Thank God that they don't. 

Travel to The Hospital AKA torture chamber annoys me most. Waiting times piss me off. Queues everywhere are a real turn-off. Waiting areas are sterile, aged and tired and there are no seats. Then there is a sign "Do Not Wait in The Corridor". Well, smart pants, tell me shall I wait outside then..?!?

In preparation for the scan, low-iodine diet looks forward to meeting me www.cc.nih.gov/ccc/patient_education/pepubs/lo_io_diet.pdf. Thyrogen injections are eager to attack me with that very sharpest needle. www.thyrogen.com/ Awesome. I can't wait. Just makes me wonder how far I could push it with the low-iodine diet. How strict must one really be? What if I all of a sudden start craving for pasta, cereal, chips and all that Thou Shall Not Eat? One or two mouthfuls probably won't hurt? Once again "patient is non-compliant" will be documented in my file.
There are three more questions I need to answer too: What if I don't go at all? No scans, no appointments, no follow-up.What if I go, but walk out?What if I just don't go, cancel all appointments, scans, needlesticks etc.

I may come up with answers one day, sooner or later, before October arrives, but before that I may need to read my own survival guides I wrote in the blog in 2012 and 2013. Will I survive by reading my own survival guides?


 

Thyroid cancer revisited

List of unwelcome people, life events that suck and general needless stuff is endless. Cancer tops the list and will always have its safe Top 10 spot. Year ago I was undergoing series of tests (yes, those that have no end in sight) and was preparing two thyroid whole body scans and the radioactive iodine treatment. Year older and wiser now I can say it was "not that bad". Not nearly as bad as when compared to leukemia treatment. Not as bad as having long term illness that has no good prognosis, ever. 
But yes, of course it sucks. People around me had to watch me turning into a monster: all my favorite foods were on "banned" list, and lack of Synthroid just made me look like .. well, a monster. Puffy face cookie monster. Not horror movie kind of monster. Good thing was that it was gradual, not an overnight change. I did not really see- or want to see- anything being wrong. Mornings were hard, as if I had eaten junk food and been binge drinking and had not recovered from hangover. There is nothing make-up can't fix, so I thought, and since thyroid hormone was on a very low level in my blood, I was happy. Felt quite normal (tired normal) and drove to work.
It's only when I got there, I literally wanted to lie down on the floor and not get up at all. It was cold all the time, so I thought. When my menstrual period came (I so wish it had not!), I did not know whether the bleeding would ever stop. I did not even want to get up and walk for the fear that I would just bleed and bleed. No one warns you about these things- if someone did, or if I read it in somewhere, that information was long gone at the time when I needed it. So, in case it happens to you ladies, you know now.
Forewarned is forearmed. Don't worry if you forget, just go home and rest. Well, after the RAI, my period disappeared for four months. Fabulous. For the first time in years my hemoglobin was somewhere above 12.

Comparative study moment: which is worse; being off Synthroid or having to stick to low-iodine diet? Easy one! 
If I was off my meds, but could still eat whatever I fancied...
If I was on my meds, but had to become low-iodine kitchen guru...
Both have their ups and downs. I'd go for the 2nd option.
Where is the third option- meds, diet and THYROGEN? 

I've really not read many positive experiences being on Synthroid. Low iodine diet works for some ( I guess it's either that or starve). I don't spend much time in kitchen, but asked people their thoughts about low-iodine cooking. Completely eliminating salt was useful when my face started getting puffy (that is when I realized it was happening. Colleagues said later that no amount of make-up, cucumber face-masks and others could cover the damage). There were days, more toward the end, when I felt like one wrong word could start a war if I don't get the taste of that particular food I want. The truth is one bite would not have been enough. Yes, I remember having spaghetti and garlic bread once (twice...? but since underactive thyroid gland causes memory lapses..), and ate them without any guilt feelings. Nearly licked the plate so I could get all the sauce.

Year later I don't know if any research has been done about low-iodine diet- is it really the key to the success of RAI? Despite of my spaghetti dinner, RAI in my case was successful. Thyrogen still isn't available everywhere, and I would be so reluctant to have any scans done now without Thyrogen.

In hindsight it all sounds so easy. Should have done this, that etc. One thing is for sure: without support from family and friends it is much harder so do your best and don't push them away.

Today is a good day. I have not thought about cancer at all. I've not stood in front of the mirror examining the scar in my neck, because it is barely visible. I haven't talked about cancer, because it's not part of me and I've conquered one of my biggest fears.
Isn't that what they say: "Cancer, you chose the wrong bitch!"

Anxiety Attacks

Radioactive iodine: done. Treatment completed. Scans completed. Realization that time is an illusion.
I spent 3 days in Hospital- somewhere there in the distance in that photo above. After those 3 days I was out on pass for two days, and returned for Thyroid WBS. I don't have official report yet, but I know for sure it is clear.
CLEAR!!

One of the most awful anxiety attacks hit me when I was in hotel for those two days. It may have been the shock of realizing what had been going for the past few days. As if I had been imprisoned, with contagious disease. Radioactive signs everywhere.Toxicity. Traumatic. Pretty much everything was covered with bed protectors, those white pads that they also call incontinence pads. Disposable, sterile, windows high up close to ceiling. I was truly in a prison. Each time, when I was not yet radioactive and in isolation,  when I opened the door and walked out, I felt as if I was prisoner escaping. It was almost relief to return to the room again.
Huge concern for me was that I don't have the emotional strength to deal with this. I struggled with depression after my 1st encounter with cancer in 2007.
Food was low-iodine, it was tasteless, colorless and not at all appetizing. Disposable cutlery, plates, tray. Cold soup, cold corn, always the same pasta, cucumbers and lemon slices. Cucumber salad was sealed in a plastic container, so tight that I always managed to break it when I attempted to open the lid. Totally burglar proof! No dairy, no bread, no salt. Here I was thinking, reading the menu that I would have tasty pasta with spicy sauce, lemon pie and lentil soup. Well, this is what it was:

I lost weight, not huge amount, and regrettably that extra weight has returned. Never mind the weight, cancer is dead and gone. I was still angry. Blood pressure reflected this. 188/110. Angry Birds. Coffee shop in the hospital served me delicious cocktails and coffee, which was strong and gave me palpitations. One good thing, among many others, that resulted from hospital stay was that I quit drinking coffee and black tea. Since then I have had green tea. Craving for coffee- no, that feeling was left behind in hospital.
Most of the staff members were ok, but then there were those who were clearly afraid of me and my temper tantrums. Then there were the patronizing ones. Nasty ones. One morning it appeared that no breakfast would be served. At 10am I left my room, visited the coffee shop and  bought cup of coffee and strawberry cocktail. I returned, stopped at nurses' station and yelled at the ward clerk. Who is in charge of this shift???!!! When I get angry, I get upset and start crying. This time was no exception and all the dignity I had walked in with vanished within seconds. Charge nurse followed me into the room AKA cell, and offered to bring breakfast in. Same old stuff, and I said no. Soon afterward, physician came in with the same nurse and asked if I need to see a PSYCHIATRIST? Do I? Hell no. What's going on with these people? And what is going on with me? Just because idiots forgot about me. In hindsight, perhaps I could have chosen an entirely different approach. What happened to manners? My mom certainly did not teach me to behave this way. At the time it felt very right, justified- how could you guys leave patient alone in the room, not asking even once if they are ok!!!
The truth is I don't have a bad attitude and behave like this all the time. It was all reserved for this occasion.

Later that day my friend rescued me from the jail and took me for lunch in Steakhouse. Cool! I still had to stick to low-iodine food, but it was fantastic to get out. Thank you K, it was one of those lunches I will never forget.
I went to bed happy that evening, woke up at 4am thinking I was in my own bed.

Nuclear med tech K (yes, another K), walked in next day, and said it is the DOSING time. Ok. She was followed by another tech. K was smiling, looking cheerful and optimistic and I told her she was the first genuinely happy person who had entered my room. Premed was Zofran (ondansetron).
55mCI of radioactive iodine 131, T 1/2 eight days or so. Two capsules, not much different from any other capsules I have seen in my life.. pretty anticlimactic. Setting up the scene took longer than swallowing them capsules. Right after that all the nuclear medicine peeps left the room, as if they had not even been there.  Geiger counter must have shown some awfully high reading.I wasn't allowed out of my room. First few hours went, clock was ticking. Nothing happened. I did not glow, my pee did not glow. I was not fluorescent green. :-/  No superpowers, nothing.
I thought "This isn't so bad. This is going to be just fine." And it was for 2-3 hours. Incredibly strong wave of nausea and vomiting kicked in and I spent most of the evening walking between The Room and restroom. I wanted painkiller- they brought me Tylenol. I took another Zofran from my own supply. I wanted an injection for nausea, but I was told no one can enter the room. I asked for sleeping tablet. It took its time to reach my room. By then I was annoyed, decided to take a shower and went to bed. Slept without the tablet. Angry. I was much closer to breaking.
Following morning I was told I am no longer radioactive and I can go home- but that I'd have to return after weekend for Thyroid WBS. Great, awesome, but I felt fatigued, sick and anxious. It took forever to book hotel, gather my thoughts and belongings, get a cab and transfer to the hotel. Sweet freedom.
Arriving in the hotel was weird- I felt I had no right being there. I had no hair. I was pale and sick looking. All these five star rooms and restaurants. My place was still in that prison, but at the same time I needed to go to a place where I didn't have to feel anything, or so I thought.

Anxiety attack: I crawled back into bed, took Valium, watched TV. Got out of bed, paced around the room, looked outside from the 33th floor and thought WOW, I am no longer in that awful prison cell.

Anxiety. I slept a bit. Went out to supermarket, but short walk there and back wiped me out, and I returned feeling shaky,sweaty and nauseous. Shower. More TV. No appetite. Everything tastes of metal. I felt as if I was falling apart and completely shut down. I took another Valium, knowing that my body is already so full of drugs that I may not need more. I wanted to cry, but could not. Should I really have accepted or rejected this treatment? I signed that consent form, after signing read the small print.

At the same time there was a feeling of lightness, silence, hope. At the time I did not yet have the scan results, but I felt that cancer was gone. It was truly gone. We killed the sucker! Could my horse, who died on November 21, 2012 taken this disease with him? Physical wounds may have healed, but what remains is deep and actually quite painful- question of how did I in the first place get myself tangled up with cancer?  I look over at all the bottles of pills on the table and I just want to cry; how  did my life get like this?

I have been through a life changing experience so now it is time to change my lifestyle to reflect that.
After-effects: my memory seems worse- or perhaps just more selective? I don't sleep well. I lost quite a lot of hair- combination of treatment and stress, I think. It was getting ridiculous, waking up in the morning, more hair on the pillow. That itself made me feel sick so I shaved it all off in hospital. Bald patches still keep shining through, but at least it is growing back in some parts. Black and grey! It was a very plain mousy brown before. My arrogance that wigs are for wimps has turned to humble pie. I do own two wigs, courtesy of my friend KG. Scarves and hats of all types have become best friends though-not the wigs. I realize now that I also chose to have treatment because I was hoping it would kill me, if the disease itself did not. Neither happened. I pushed forward, and I'm back.

Those days have gone, difficult and challenging moments passed. Time truly is an illusion. It's a blank slate now - new beginning, endless possibilities. It will work itself out somehow.

"The day will pass, like many other days that have been and are yet to be. With its various ups and downs. And lots of crazy and wonderful efforts of people to read into, and express, deep and significant meanings and insights. Many will be inspired, others will be afraid. Some will hold their breath while others will not even notice or care."
- Shiv Charan Singh

Verdict

Thyroid WBS results are finally out: treatment option, the only one is radioactive iodine, aka RAI. It will probably be done sometime in this month. Happy Halloween.
I was hoping that the scan result would be clear. It was not.
I was hoping that it would not need treatment. It does.
I was hoping external radiotherapy would have been an option. It is not.

I'm just going to let it go, and go with the flow. Thanks be to God that there is something that can be done.

How to survive Thyroid WBS, preparation by Thyrogen

Thyrogen, AKA recombinant TSH is familiar to some of us.
This was my first encounter with Thyrogen- and I do not regret it.
Thyrogen is given as injections in a muscle, and I was lucky that colleagues at work could help. I guess one of the best and most recommended injection site is your buttocks.
Injection itself did not hurt much at all. Perhaps because some very skilled colleagues were there... There aren't much of Thyrogen in the syringe, and if it is given slowly, then there shouldn't be much pain. That's the good part of it. The very best part is of course that there is no need to come off Synthroid weeks before scan, suffer the low-iodine diet and feel miserable!
I would recommend Thyrogen, even if you are not fond of needles and injections. It is worth it.
I was prepared for side-effects too- nausea and vomiting weren't good options for me who had to fly to another city and hospital for the Thyroid WBS. No one likes nausea and vomiting anyway.. And then low iodine diet does not always stimulate appetite. Shame if it all was expelled out in an instant!
I had some nausea- I was on Zofran (ondansetron) and nausea was not an issue. Headache was. It was ever present, nothing seemed to help. Only when I fell asleep it was somewhat relieved on the following morning. No big deal really, compared to what weeks without Synthroid would do. Been there, done that too and never again want to go through the same. I would not wish it to my worst enemy either.

Thyroid WBS was pretty easy. Swallowing liquid iodine (tiny dose measured in a syringe) was easy, even for me who finds swallowing tablets very hard. I was told to SWALLOW it right away, not swirl it in my mouth, which I must have done, involuntarily and unintentionally. If someone tells you to swallow, not taste, of course there may be temptation to TASTE it too. Which is what I did, and I think it showed as increased uptake in the mouth and upper throat region. Perhaps this also explains the pain and discomfort I had in my mouth- salivary glands appeared swell up. But hey, not a big deal- I was on Thyrogen! My head felt very very round, congested, huge. On the following morning most of the weird sensations had gone. I was told to drink water and I did as if my life depended on it: close to 3 liters that day. Maybe more. All I know is that I was in the restroom numerous times!

Result of the scan is another topic for another blog post... I have a feeling radioactive iodine, mega high dose is expected... Good old RAI.

I'm not sure about whether or not insurance covers Thyrogen. Some may not.
I'm also not sure if Thyrogen is available everywhere- there have been reports of shortages.

This is what Thyrogen website says:

"In order to prepare you for ablation, your physician must stimulate remaining thyroid tissue to absorb the radioactive iodine that you ingest in the form of a pill or liquid. Stimulation can be achieved in two ways. The first method, withholding thyroid hormone, was used exclusively until Thyrogen was introduced. Withholding thyroid hormone replacement allowed thyroid hormone levels to drop before ablation, therefore making you hypothyroid. The second option involves the use of Thyrogen (recombinant human form of TSH) which can be injected into patients prior to ablation thus avoiding hypothyroidism. In essence, Thyrogen allows your physician to start you on thyroid hormone therapy right after your surgery, thereby avoiding the signs and symptoms of hypothyroidism."
http://www.thyrogen.com/patient/about/thy_pt_about_thyrogen.asp 

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 3

9 days have passed since the Scan number 1.
6 days since the Scan number 2.
Back on Synthroid for 9 days.
I am beginning to see the difference. I no longer need to nap for hours and I've been back at work. My exercise tolerance is pretty poor and last riding lesson on Sunday Jan 15 was cut short, because I was short of breath all the time. Riding is not just being a passenger on horse-back. Why even bother to ride...? It is one of those things I do, to prove myself I can DO it, prove those all-mighty doctors wrong. Why should I stay indoors all the time and give up something I love doing? I'd ride for five minutes, if that's the best I can do.

6 weeks without Synthroid puts enormous pressure on both physical and mental body. Everyone, as we all are individuals, handles it in a different way. For some it's a real struggle, for some it is easier. At the time when all I could do was ask for sick leave, I felt like s..t and all I could think was go home and back to bed. Few days after that I felt like I needed to lay down on the floor, because of extreme fatigue. I think I could have slept 24 hours a day. On top of all that.. my period was extremely heavy! Yikes!!!
And then, mammogram! Nooo way. Yes, I've been postponing it since last August, knew very well it had to be done, but there were days when I simply forgot, and another few days and weeks when I chose to ignore it. Mammogram was clear, not at all as bad as I had thought. Uncomfortable, yes. I nearly passed out when they were taking the oblique views, but it was really over so quickly that I had to "time" to pass out. I could have taken Brufen or Tylenol or something beforehand, but it all happened so suddenly. I went to have a chat with radiologist and all of a sudden I found myself in the "mammo room". I had a chat with another patient, who was very clearly alive, breasts not crushed, not in pain, not attempting to get out the department as soon as possible. Feeling encouraged, I went and had it done. It is worse than blood test, but absolutely not worse that pap smear. Definitely an option, when it comes to choosing whether to break my arm or having mammogram. I'll take the mammogram. I never thought I'd say this.

I guess it's like giving birth, that experience of labor, you forget it eventually, when you see the "result"- baby. I also find most of the days without Synthroid are slowly disappearing into shadows and I don't recall what that fatigue was really like. Was it really that bad..? Well yes, when I felt bed was no longer an option, that I had to rest on the floor, yes it was bad.
I questioned the need of thyroid scans, all these without my meds and lack of follow-up. My TSH dropped down to 127 and no one thought it is necessary to call me and ask if I am ok. Thanks be to God my husband, co-workers and friends were around, even though husband travels frequently and does not stay at home for long periods of time.
Once the Scan number 1 was done, I called the good old endocrine doc and said I'm starting Synthroid TODAY, no matter what, and I did.
Right now endocrine doc is waiting for tumor marker blood results and I feel he is dragging his feet and waiting for what... miracle..? Something that would say the scan was wrong and there is no activity at all. He is in denial..? Aww poor man.

He has most gorgeous eyelashes.

I did not "survive" those six weeks with his eyelashes in my mind.
I got out of the house, I rode the horses, I took yoga classes at home in front of the TV. I slept, I cried, I laughed, I watched cartoons and DVD's. I talked to people and horses, not really remembering a lot of those conversations.. I'd have loved to have stamina and courage to stay 100% with it, physically and mentally fit, but no, I could not do it.
6 weeks eventually comes to an end..

How to survive without Synthroid for 6 weeks in preparation for Thyroid WBS Part 1

6 weeks- 1.5 months, 45 days approximately.
The hospital where I am going to have the scan has protocol that says stop Synthroid, start Cytomel for two weeks and then stop Cytomel too. TSH check prior to ingesting iodine 131 capsule. Now it looks simple enough written like this, and this is why I also thought six weeks would pose no challenge at all.
I stopped Synthroid in late November and felt almost normal. Cytomel caused right middle finger to twitch, and then proceeded to tremor so that I was totally unable to type and write- both essential skills in my work. Once Cytomel was gone, it was a rather rapid decline. Fatigue hit me first, then puffy eyes, fingers, toes. Then incredible tiredness. Then that sort of feeling that drove me to endo's office begging for magic solution, which in this case was sick leave.
You do not want to start cooking and planning weekly meal menus, when you feel this way. You might feel you need nothing to eat or drink at all. If you, like me had to stay on low-iodine diet for two weeks prior to iodine scan, that's another hurdle. I am very fond of bread and corn flakes and ice cream, and now having to limit those to almost zero was depressing. At the very beginning energy levels are still ok, it would really be worth planning some activities for those days off from work/school/studies, even if it just one activity a day. Worst for me was feeling I am trapped at home and there is no place to go. My horse and precious friends (thank you K, you know who you are!) kept me going, no matter how pale, tired, puffy and edematous I looked. I did feel at times that I couldn't go out at all looking like this, but I did.
Food cravings are another challenge! Carbs, carbs and more carbs! I succumbed twice and had spaghetti and garlic bread. Piece of chocolate on another occasion. I managed to find wheat free, salt free rye bread in one of the local stores, and it was a real treat!
When I made the effort to cook- stuffed peppers filled with onion, minced meat, garlic and mint and spices, I felt pretty much human again. Waiting for the real serious hypothyroidism to hit, and then begin to plan what and how to cook is just not always possible. The amount of energy that's spent in thinking and planning is just too much some days, and the easiest option then is reach for corn flakes and milk, or not eat at all. Both aren't good and we all know it- when I had spaghetti and garlic bread, I was just hungry and could not think about anything but food, preferably pasta, something very salty and tasty. I got all that- and felt no guilt either, not then, not today.
The diet is not 100% iodine free, but I guess as close as 100% as possible. It does not say "Thou shall not eat anything that contains iodine". It is a low iodine diet that sucks if you're on it long term and do not like the foods that you CAN eat. 2-3 weeks is pretty long term to me - of course nothing compared to diabetic, wheat free, renal etc diet. I'm just saying that maybe possibly one could cope without Synthroid, but with an added pain in the butt=diet it becomes much worse. Feels like there is no enjoyment left in life. Internet is full of low-iodine recipes, but if you've got no strength to get up and cook, then it is hard. If you plan ahead, prepare lunch, dinner and freeze them, then you are much better off I would say.

This is not the time to make long-term plans or financial decisions either.
Not the time to embark on major weight loss program, start training for marathon, even though some people may have done it.
There are days when "brain fog" just does not appear to clear. Can't read, can't write, type, remember what was discussed just moments ago. Your mood might be difficult to control- mine certainly was. Just feeling wrecked inside and outside, does not leave much empathy toward people, who carry on as normal, not having to worry about anything in the world.

Each of us have our own challenges to overcome, and preparing for thyroid scan is pretty simple and straightforward. Compare it with bone marrow transplant, major operation,recovery from burns, major financial loss, damage to property, violence, war,death of loved one, loss of limb or car crash. There is always something worse, but these just aren't on the top of the agenda when you can't get upstairs without getting short of breath. Each day is a step towards the goal, which is the scan, and then fingers crossed that it all goes well. "Be positive, think happy pink fluffy thoughts" and it will all be ok.
As long as it's done, not postponed when you've reached this far and then coping with the outcome whatever it is becomes just tiny bit easier to handle.
My mind, the state it is in right now, can't handle much more information- which really is just as well, because I could and should think about What if's... What if the scan is not clear..? Blood tests have already shown something suspicious in tumor markers in my case, so I really need a clean and clear scan. Let this be the last scan too. Pliiiizzzz?

There is something called Thyrogen, recombinant TSH, which has been used in preparation for thyroid scan, but our hospital does not have protocol for it in nuclear medicine. What century are we in? Can we not get it for our patients and make their lives easier? I've read about Thyrogen, but it is difficult to recall what I have read right now.. Brain fog. My aunt, who had chemo for breast cancer, always talked about "chemo brain". Brain fog should keep me and my co-workers entertained, when I return to work soon.

I cried last week, once, when there was something I needed to do- sign a paper, unbelievable. Simple stuff in normal circumstances, but not right then. Husband drove me to the office, I threw up in the car once on our way and once on our way back. I got into an argument at the "office" about signing the document, feeling nauseous and feeling like I could have thrown up on that idiot who was grinning behind the desk- no doubt feeling protected there. Since there was no way of attacking them physically (as if I would do that normally..), verbal abuse was the way to go. They wanted me to sign the document was well and a FINGERPRINT!!!!! Yo man, I must have not heard you correctly, but yes, there is was, ink pad right in front me. Ink effing pad! Fingerprint! All women must give their fingerprint. That was in Jurassic Era, mate. I asked that grinning idiot, whether he thinks I'm unable to read or write. Grin as response, nothing else and gesture towards the ink pad. Ok, they won, they got my fingerprint, perhaps not the one they initially wanted: my Middle Finger. Yay baby. On the way back home I cried and husband could say nothing to make me feel better.
I have since recovered, but this goes to show moods are very volatile during hypothyroid phase.

Part 2 will follow- perhaps it will make more sense then.
At least I will have scan results by then.
By then brain fog will have been lifted too, and I can see Myself in the mirror again, not some puffy Cookie monster.
Part 2 will hopefully contain something more positive- such as what did I learn from all this. If anything.

Living without cancer

People often ask me how I feel now, as a recovered cancer patient? These are not the specific words they use, but something along the line. Every time it is still a surprise, depending on my my mood how I answer. I've even denied the fact I ever had cancer and why not, there are no scars or old injuries to be seen unless you know where to look. Most people don't bother. How do I feel?
Happy, delighted, ecstatic, relieved, stressed (yes, after the questions start, I do feel stressed and annoyed), angry, bored..? I usually just say I'm fine, thanks (hahaaa depends of course my mood).

How did I get cancer in the first place? Does it just appear like that, like a flu? Or was I exposed to post-Chernobyl conditions in 1986? Why me? How do I live now- is my life somehow meaningless and empty without clinic appointments, operations, blood tests, scans..?
No way. I don't know how I got cancer, but all I know I was diagnosed with Hashimoto's thyroiditis and an underactive thyroid in 2001 and since then it has been a constant battle with hair loss, weight gain and loss, fatigue, depression, brittle nails, dry skin, endless fatigue.... Mostly a downhill journey. Iyengar yoga arrived as a rescue in early 2002 and after just a couple yoga classes I felt 100% better- compared to what I felt weeks before yoga. I thought it was a miracle cure, one without medical intervention and it was always a pleasure to see my Dr's face when he asked what "miracle" medication I am on. No meds, just yoga.
It was often an endless battle between me and the Dr, help "should" (remove this word from the vocabulary, it stinks and sounds so so negative) be sought from traditional medications, not from this weird alternative stuff.
Years after, from one continent to another, years in the UK, France, the Middle East, I qualified as Kundalini Yoga Teacher in 2006. One of the best moments in my life, by Guru's grace. These years were healing, but not in any way kind at the beginning. One step forward, one back, all the emotions were there and until I learned to recognize them and deal with them, not just hide the in a closet, only then some progress was made. Meditating once in candle light for 2.5 hours, I did not believe I had progressed at all, but those hours ended as always and not everything was the same day after.
Awareness..
At first it felt unbearable, this constant alertness, feeling of a flow. Seeing everything in more detail. Trees, landscapes, animals, lakes- nature in general. Cardboard boxes and concrete buildings were lifeless. Organic food began to taste delicious. Breathwalk came into my life (see www.breathwalk.com or more details) and Albuterol inhaler soon belonged to the past. Lots of these things. Natural methods of healing.

Again, years later, I was awoken by a feeling that something in my body is not right. Years of healing, years of unhealthy diet and lack of exercise, years before yoga and the newly developed awareness brought my life into standstill. Numerous tests followed soon after; thyroid scan, ultrasound and three painful biopsies and blood tests later the diagnosis was clear. To me, yes. To the clueless Dr it was not clear at all. I knew, i knew right away.
September 2007: the first operation and the diagnosis was clear- even to the stubborn Dr.
January 2008: the second op, and it was finally clear. Life continues without the thyroid and several lymph nodes.

Life is ok, I feel fine. Every day is precious, even when work sucks big time, even when I have failed to meditate and do my daily exercise. One day is a misery for someone, delight for another one.

Life after cancer, even fearing a recurrence, is ok. I ride my horse, chat with my cat and feel things on a much deeper level. My compassion is not endless, not towards myself, even though I am much kinder now. Something tells me I know how I got this cancer- it was when I invited it in, to stay in my body, when the circumstances were too much to handle and i needed an escape. Anger gives you cancer- this is what I remember Yogi Bhajan saying. True, I was furious, not angry.
Can cancer then release this anger? Feeling so ill, vulnerable, lonely, cancer is not a good company. Thoughts of rescuing myself, but how.. Under the knife, medications and life long investigations, scans, tablets, injections. There is no way you can say you know, because you don't know how I felt then. No one did. One cancer experience is not the same as the textbook experience.
Chernobyl might have played a part, as well as my work in "radioactive" environment. Family history- maybe. The Gulf War, maybe.

Life goes on, one day at the time. Today may not be so good, so full of sunshine, not enough sympathy, but tomorrow may be better. I need to remind myself abot this. Cancer may belong to the past, but part of the experience remains. I have been cautious to say these words, but there must have been something that yoga taught me, and this "something" (awareness?) saved my life.

Life up in the Alps certainly brought many experiences and plenty of fresh air and I am grateful for those weeks I spent in France. It was never easy, but I always came back feeling truly happy. Is there a better place for yoga in this world? In my childhood I read about these yoga "masters" and saw pictures about incredibly flexible bodies. Me and my horseback riding body type, "yoga ain't for me". So you cannot know what life brings. Without yoga I probably would not be here. Without my job I wouldn't be working in the Middle East, in Europe, in Asia.
It is safe to say I would not have met the man I love, if it wasn't for the scar in my neck. Without that we wouldn't have had anything to talk about.

I can live without cancer, I was having challenging time living with it, but it was after all part of life and part of the learning process. One completed cycle in the washing machine.

Good bye cancer

So many surprises along the way.. So many I have kept hidden, did not want to share just yet. Part of this is because there is quite a distance between London and Dhahran.. and I was depressed too.
I was diagnosed with thyroid cancer again in September 2007- this was the month of the official diagnosis, but I already knew in May 2007. Knew for sure. Don't ask me how, I just knew. Call it intuition, awareness, my own stubbornness, that I insisted on more investigations. Long road to follow, but this is April and I am almost fully recovered. Sadness and depression still linger on, but each day is brighter. Mind you, the treatment is not yet finished, even though it's nearly there. I've got to have RAI- radioactive iodine treatment.
Months ago I said to one of my friends that I was glad I got cancer. It was a blessing in disguise, not the easiest challenge in my life, but not the most difficult one either. It was certainly taught me a lot- life is precious.