Low Iodine Diet: The Sequel

It's official. I've got my Thyrogen. I've been on the Low Iodine Diet (LID) for the passed week. In some ways, I feel like I've gone back in time as I prepare for my scan this week. A few months ago, I cried in the nurse's office as she told me the details of my scan-- the number of appointments, the Thyrogen injections, the bloodtests, and then finally the scanning dose of radiation. That was the last straw. Radiation, again. It was a strange thing for me to realize that I had to enter the world of thyroid cancer again. Especially since I felt like I left my status of cancer patient behind. But there I was crying in the nurse's office and when I dried my tears, I began to cry again.

"Why am I crying?" I wondered. It didn't make sense. "Why can't I stop?" I barely cried when I was diagnosed two years ago. I didn't cry at my surgery. I didn't cry when I was in complete isolation for for four days. Why was I crying now? Logically speaking, doing the scan and preparing for it wasn't any worse than anything I had been through already. I won't need to go into complete radioactive isolation for four days. I decided to do my scan in September. After the wedding. After I had gone back to work. After I had some time to prepare for it... mentally... I can do this. Last Sunday, I drove to four different health and natural food stores looking for salt-free foods. Iodine free salt is not sold in Canada is what someone told me. I ended up using the Windsor Salt from the last time I was on the LID a year ago. I realized this week that I can do this. I just can't wait to get past it. So in the meantime, I am enjoying a largely whole foods like beans and rice minus the salt. I can do this. I can get drug benefit coverage reimbursement for the $ 1594 I spent on the Thyrogen.

I will go to the appointments that I need to. Another woman going who was diagnosed with thyroid cancer, told me that this scan is part of the follow-up. The protocol. When I asked Endo #3 if I had to do a scan, he said no. That put it completely out of my head. No more radiation. No more hospital. No more LID. Lies. But then Endo #4, my new endo, told me I needed to do this. Disappointment. Betrayed? Tears. I will get past this. I am sleepy but a different kind of tired. At least I don't have to come off my Synthroid for two weeks. At least I don't need to be in withdrawal from synthetic thyroid hormone. I will get past this. The scan is a much lower dose of radiation to see that the cancer cells are gone. I will need to be away from children for 3-5 days. I will need to sleep in a separate bed from my husband for about that long.

I wonder will that mean I don't need to think about cancer after the scan this Friday. Maybe... maybe not. I hadn't thought about it for a while even as the editor for the Thyroid Cancer Canada newsletter. When I go to the gym to workout, I have stopped thinking about the fact that I "beat the odds" or are defying the cancer that attacked my body. Cancer had started fading into my memory as something in my past. I want cancer to stay there.

Now what?

I find myself at an interesting juncture. As I thought about the results and processed what the Endo # 4 and cool radiologist shared, I realized that based on what they said, all they know is that the thyroid cancer has not spread. (Yay!) But what they don't know is if the detected "activity" in the neck is cancer or not. So follow-up blood tests will determine this. And these tests will happen over the next coming months. I may or may not have to do the iodine again, albeit at a lower dose.

So now I ask myself, now what?

Live life normally, I suppose. However, the news is a little unsettling, isn't it?

Results, finally!!!

My very cool radiologist both phoned me and e-mailed me yesterday.

This is what she said in the phone message (aside from a few minor edits):

Your scan was reported quite a few days ago, the day you came in to have the extra pictures. Everything looked fine... There was a little focus of activity in the neck where the thyroid gland was. That we see basically all the time after anyone had surgery. It's very difficult for the surgeon to get every last bit of thyroid tissue out. There is almost always something left in the neck. That is really why we give you that therapy dose. It could be normal thyroid tissue or thyroid tumour. The fact that we give you 100 miC should treat that, kill that. And there is nothing nowhere else. Probably what endo #4 will do again will check you with a tiny bit of iodine in the year.

Then Endo #4 called me today. This is what he said (again with minor edits):

So there reveals that there is some uptake (activity) in the neck and this is normal. The presence of any remaining thyroid cancer will be revealed by follow-up blood test results. We usually wait a year to give the iodine treatment again depending on the blood test, depending on what the blood test results reveal. You probably wouldn’t receive iodine soon again since you are not in a high-risk group.

Wonderful news! I'm celebrating!!!!

But both of them said they have heard nothing about this mysterious symptom I have been having-- NOSE SORES!!! Yes. The grossest nose ailment known to man. It's funny since I have looked it up on the internet and others have claimed to get this after radiation (albeit, very rare). The thyroid cancer online support group I wrote to had very few who claimed to have nose dryness, but no actual nose sores. (These bloody scabs growing in my nose which are uncomfortable and tight.) Apparently, these too should go away with time. One person said a year.

Aaaaahhhh!

Waiting for Whole Body Scan Results Playlist #7

Jennifer Lopez Waiting For Tonight

You know I've lost it when I pull out the J-Lo. Okay... well she isn't my favourite singer but there was a time when "I'm Real" was my tune. Anyway, I'm still waiting. Hopefully I will find out today and not tonight (or later).

Waiting for Whole Body Scan Results Playlist #6

Seal - Don´t Make Me Wait - Paris - Legenda em Português

I chose this song from Seal's self-titled album Seal IV released in 2003. I love that chocolate smooth voice and I was probably the only Seal fan in my high school. (I loved Seal before Heidi Klum and the "Kiss from A Rose". Even before "Prayer for the Dying" and "Newborn Friend" in 1994. I'm talking about "Crazy" Seal in 1991 and "Killer" Seal in 1990 or rather Adamski.) I love Seal for his angsty and brooding tunes and really identified with him. He seemed like a loner, he always wore black, and I thought he was sexy and his facial scars only added to his appeal. Plus he is a Black Brit (like Estelle, read #5 on my playlist) so he has a cool accent. And he seemed unique: a black man playing acoustic guitar tunes heard on Seal (released in 1994, my first Seal album or cassette tape, rather). (Well, there were other famous Black male guitarists. Bob Marley... I can't think of any more but I know there are more... NOTE: My fiance laughs at me when I read this to him because he says there are so many like BB King, Jimi Hendrix, Muddy Waters, Lenny Kravitz, George Benson, Ernest Ranglin,... the list goes on and I know each of these artists. I feel like a dolt. LOL.) I even had an outfit that my sister nicknamed my "Seal outfit" which was black leather pants and a fitted black shirt with white pinstripes and buttons.

"Don't Make Me Wait" seemed so fitting. I love the blue lighting in this live Paris performance and the simplicity of the piano (played in deep jazzy chords) is delicious. I am tired of waiting and it won't be until tomorrow (at the earliest) to get my results. I will call my endo #4 back and if I don't speak with him, I am e-mailing/calling the radiologist at the hospital. (She seemed pretty cool.) Here are some lyrics from this tune that really spoke to me:

Are we tired of feeling blue...
Don't make me wait long
Sounds like a sad song of mine...

Okay, the rest of the lyrics don't really apply because it's talking about a relationship but which song doesn't. Interesting that he first line of this song is "Are we tired of feeling blue" It's very similar to his other song that I almost picked for this playlist released on the same album (Seal IV) called "Waiting for you":

Everyday, a shade of blue
You won't believe
What I'm going through
It just feels like I can't afford to let myself go
No, oohooo no...

Well, I love blue. It's my favourite colour and his been used to signify everything from sadness and depression to creativity to children to wealth to peacefulness to water. And I guess blue can be all of these things put together.

On another note, I have been finding a lot of blue butterflies around me. I have been photographing them and will post them soon.

Waiting for Whole Body Scan Results Playlist #5

Estelle feat. Will-I-Am-Wait A Minute(Just A Touch)

Although this is not my favourite Estelle song (try the house-inspire throwback "American Boy" and the sexy lover's rock vibes of "Come Over"), it is about waiting. (And also very difficult to load on to this blog, I might add. So you can watch the actual music video here. But it sounds like she penned the songs with the same mindset as Janet Jackson's "Let's Wait A While". Basically, "No matter how cute you are. You ain't gettin' any." Check out the dude's expression at the end. Shame! Dry! (As we'd say in Toronto.) Love my Black Brits! (You'll know what I mean with tomorrow's playlist tune.)

Waiting for Whole Body Scan Results Playlist #4

Janet Jackson Let's Wait A While

I loved this song when it came out in 1987 but I was only about 9 years old and did not quite understand "what" they were waiting for. I know they filmed this video in this kind of Film Noir style but it is extremely depressing. Why does Janet Jackson look so glum? Even more sad than the dude in the video who isn't getting any? She's obviously suffering over this one. Or maybe she is suffering from waiting the while or from telling her guy to wait a while. In the end, I guess she really did stick to "waiting a while" because 7 years later when she released the janet. album she changed her tune to "Any Time, Any Place". 7 years! Nevertheless, "Let's Wait A While" is a pretty song and has a good message-- SLOW DOWN. But who says waiting is easy? Definitely not for these "Whole Body Scan" results. It's already been 5 days! I called my endo yesterday and I have not heard anything. They said it should take 3-5 business days and I had my second scan done last Monday. That's 1, 2, 3, 4, 5 days! SIGH! I'm "Waiting to Exhale". That's you and me, Janet.

Waiting for Whole Body Scan Results Playlist #3

Bob Marley - Waiting in Vain

I wonder what Bob Marley would have thought about this video.

Waiting for Whole Body Scan Results Playlist #2

Hi-Five - I Can't Wait Another Minute - Music Video (1991)

In this installment of the playlist, as I await my whole body scan results, I'm bringing back the tunes of my yout'. This was my favourite song by the short-lived 1990's boys R&B-group, Hi-Five. I'm sure that this song serenaded a few high schoolers into doing things they should wait for. (HIGHSCHOOL STUDENTS: You can wait another minute!) And now in my 33rd year, I'm like, "What are these kids singing about? They're only 13!!!" Anyway, I didn't think that way when I was in grade 9. Don't you love how the deeply, heart-wrenching, sentimental lyrics have nothing to do with the sacchrinely sweet, happy-go-lucky music video?

Waiting for Whole Body Scan Results Playlist #1

Delroy Wilson - I'm Still Waiting

I had to dig through my dad's record collection for this classic, originally recorded by Bob Marley and the Wailers. For the next few days, as I await my results from my whole body scan, I will play my favourite songs about waiting. This one is the first one. I clearly remember hearing my dad play this one when I was a child.

In the meantime, this week I'm focusing on my healing as I attended and will attend a Reiki session, naturopathic appointment, and such therapeutic workshops on the healing journey, art, and writing. Good News: My engagement ring fits my finger again and I can actually turn it. Two weeks ago, my engagement ring did not fit at all (since either I gained weight or I was bloated from "going hypo" or both) and I was wearing it on my pink or above the knuckle on my ring finger. I met an older thyroid cancer survivor at my group today. Bad News: My sick benefits appeal was dismissed.

Cool Scan Machine Photos

Anyway, here are some cool photos of the futuristic machine which took the pictures for my whole body scan. This machine works slowly and is literally about 1 centimetre above my face and neck and other body parts. Also, I could not move and had to be strapped in. So I closed my eyes and meditated. It was the only way I could avoid thinking about the "itches" that I felt on my ankle, leg, ear, etc. It doesn't hurt. You just hear whirs and buzzes and electronic beeps. This time it only took about 25 minutes. (Friday it took 30 minutes.) Hopefully the technologist got a better scan this time.

Here We Go Again

Portrait - Here We Go Again!

The song has totally got me into the 1990s groove. This was one of my "high school years" tunes.

On another note, I was in the hospital again getting scanned. Went a lot smoother this time. I had washed my hair and scalp three times over the weekend (including this morning). My dredlocks still damp, I jumped onto the subway to the hospital. (My driver's license is still technically suspended but will be reactivated within a few days. I don't have to pay the reactivation fee.)

When I came in at 8am, I was directed to the waiting room for nuclear medicine. There was an elderly blue-eyed woman there and I listened to her speak. Her accent was unmistakable.

"Are you Jamaican?" I had to ask.

"Yes," she said.

I knew it. "I keep meeting Jamaicans in this hospital. And that's a good thing," I said.

It's true. When I had my surgery, my first roommate was an elderly Jamaican. Then when she was moved from my room (she was making a lot of noise since she was in pain, poor thing), another elderly Jamaican woman shared my room. Plus, my surgeon was Jamaican. And my medical doctor is half. Interesting, eh? I didn't plan it this way. Maybe my ancestors are connecting with me.

I used to think the hospital with the most Jamaicans was my "family hospital" in the U.S. in which many of my relatives did their internships and practicums and some still work today. (Most of my relatives work in the health industry in such professions as osteopathic medicine, psychiatry, maxillofacial surgery, pharmacy, physician's assistant, cytotechnology, nursing, biomedical engineering, nursing aide, etc. HEALING PROFESSIONS ARE IN THE BLOOD.)

One More Time

Daft Punk - One More Time

Yes. I have to do my whole body scan ONE MORE TIME. :-( Ack! It's appalling. Maybe it wasn't supposed to happen yesterday (Friday) in the first place. I got to my appointment at 9:50am. (I mixed up my appointment. It was supposed to be at 8:30am. The radiation technologist just told me to get there as soon as I could.) So I show up, they do the scan, my hair is still done in this punky style. No problem.

Then I get home and I get this call. The staff on the phone tells me that the pictures did not come out right and that I needed to come in again to them again NEXT WEEK. I was shocked to hear this. On most of the websites I have checked, they do the whole body scan exactly 2-7 days after your Radioactive Iodine. When I went yesterday, it was already 15 days after my radiation (I-131). 15 days! And then they were telling me to come in next week!

I told the lady on the phone this.

So then she tells me to come in on Monday.

"Why did the pictures not come up?" I asked.

The lady said that some people's hair is thick and that I needed to wash it every day until the scanning again. Especially the top part.

"The scalp?" I ask. Yes, she said.

"Are you telling me that there is still radiation in my hair?" i asked concerned. I have washed my hair about 7 times during my isolation, plus my hair dresser washed my hair. I went through a scan at the airport twice and nothing showed any radiation in my hair.

"There is some trace iodine and it is distorting the picture."

And with that, I tried to figure out when I was going to wash my hair. The thing is... LESSON: Most Black people, like me, have very fragile kinky hair. Most Black people do not wash their hair every single day and I don't think there is the same need as my Asian, Aboriginal, Arab, and Caucasian brethren and sistren. The natural oils that the scalp produces do not travel along a kinky strand of black/African hair in the same way. So too much washing of Black hair causes excessive drying, breakage and even more fragility to the hair. (And chemically relaxed/straightened Black hair is extremely fragile.) Plus, since I have dredlocks my hair takes FOREVER to dry (at least 24 hours to air dry). And when your dredlocks do not dry thoroughly, they are at risk for MORE breakage and even mould-growth (since locs provide the perfect air-tight, moisture rich, dark zone for mould to grow). Vanity aside, I did not want to have to go through the process of washing my hair and drying every single day. (What an ORDEAL!)

But I spoke to my mother. And as wise as mothers are and as apt as mine is to tell me exactly what is on her mind, she told me, "Wash your hair TWICE A DAY. Get that out of your hair. Who cares Nadia! Even if you have to cut them, you have to do this test." (I know my mom would be happy if I cut of my dredlocks but that's another story.)

I sighed. She's right. (Not about cutting my locs.) This is not the time to be vain. The whole body scan will accurately tell me if the radiation killed the thyroid cancer cells. (And I've GOT to know that.) And I've met several survivors this past week who showed me that even without hair, we are beautiful beings. (Duh!) Plus, my hairdresser Glenroy aka Blueloc (God bless him) told me that you can save your locs and sew them in later. It's just another 30 minutes of lying in a bed with robotic cameras taking picture scans of me.

So off I am to the bathroom to wash my hair and to get ready to do this whole body scan ONE MORE TIME. (I hope.)

On the bright side (and there is always a bright side, look outside at the sunny day), my Halifax survivor sister Julie has started her own blog because she was inspired by my blog. (I love to inspire people. My goal is to do that each day.) It's called Silverlupus: life thru cancer and other hiccups. Please check it out at:
http://cancerandotherhiccups.blogspot.com
Julie is a young creative mama who is intelligent (so wise beyond her years), intuitive, and "genuineness".

Also tonight, I'm going to see WRONG WAY TO HOPE again at the CN Tower at 6:30pm with my fiance and friends. It'll be a YACC retreat reunion all over again.

PUBLIC ENEMY FIGHT THE POWER

I had this song running through my head as I was at the civic offices trying to get my driver's license "unsuspended". Thankfully, my mother-in-law-to-be gave me a ride there. I stood in a long line up for the information booth where the woman there directs you to where you need to go. She asked me to show her all of my papers, which I did. This was meanwhile there was some dude a few spots behind me complaining about how long it was taking and how I should go into the room and take a number like everyone else. He was talking to his friend and saying something like "this is not no counseling session". I got angry and told him that she has asked me to show her my papers. Then he had the nerve to say well she shouldn't and something about me keeping my mouth shut. That nearly pissed me off. Usually I do not say anything to a jack*&# like that but I couldn't stay quiet. I finished my paper work with the woman and she gave me a number. I called to the guy and said, "His comments were so unnecessary."

What amazed me is the fact that this guy could just mouth off in the line about a situation that was not my fault. I was co-operating by giving the paperwork. Second, everyone else stood in the long line quietly while he thought he was "too good" for this situation and no one challenged him about it. (Well, maybe being in a municipal courthouse had something to do with it.) I was happy with how I handled it though. Normally, I would try to ignore the fool (but fume about the situation inside), but those days are over.

Eventually a woman came over to me and said, "What an ass(*#$, eh!" I agreed. "He was probably upset about something else that had nothing to do with you," she said. That was the truth. I felt better because I tried to stand up for myself. Albeit, my voice sounded very wavering to me and hoarse.

So after all of that and speaking with different folks in the civic offices/courthouse, filling out forms, and advocating on my behalf, I finally saw some justice. I would not have to pay the $ 150 driver's license reinstatement fee. My $ 120 driving ticket fee that I had mailed in a few weeks ago would be sufficient. And my traffic court date was re-scheduled until December due to missing my first court appearance due to my cancer treatment. My license would be reinstated within a few days.

Got to love this country.

I went home and took a nap.

I've got my Whole Body Scan scheduled for tomorrow.