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!"

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.