OK, so the title of this post isn’t exactly 100% true, but with something like cancer your reaction to good news can be a bit cagey at best.

I’ve had a few weird set backs in regards to my one year follow up scan. My blood work postponed my initial scan and then I had to get another scan because my system needed to be cleaned out a bit more in order for the radiologists to feel comfortable telling me my scan was 100% negative. Yes, I had TWO scans! Ugh. By the time everything was said and done I’m sure my thyroid stimulating hormones were well above 100. I am officially hypothroid and my system is slowing waaaaay down. It is hard to eat more than a little bit of food at a time because my digestion is so slow, but I know that each day that I am back on my medication and I am able to exercise a little more, the more I will get back on track in my daily life. This whole ordeal has taught me a lesson that I keep having to relearn . . . allow for error, plan less, and prioritize. I am learning to streamline again. I got so busy with work, socializing and other activities in my life that when I couldn’t keep up it made me feel really bad about myself. When I am in tip top shape I can do so much, but I have not been in tip top shape for awhile now. There is nothing wrong with that, or me. I’ll get back there and I have the opportunity to listen to my body and my mind tell me what is important to me. At this point I’ve reminded myself that writing and exercising are the two most important things to me and I want to really continue to do those two things in a regular way. I am able to do those things and I am going to slowly work back up to exercising 3 times a week and writing 3 times a week. I am really close to finishing my 2nd novel and I want to get it to a good revised state (the first one never really went through a 1st revision, not that it never will!).

Be good to yourself and allow yourself to heal. That is something I have to tell myself. All this should be (in an ideal world) seen though the filter of realism, not optimism or pessimism, but realism. Really, if you find that coping is easier to do through optimism, go with that, but I’ve learned that an overly optimistic perspective can lead you into a harsh reality when your expectations are dashed!

The good news is, my scan and blood work was negative for cancer– this time!  I am happy, but there is still a lingering doubt that next time I won’t be so lucky and that, my friend, is reality.

Updates for this past week . . .

My second round of blood work came back much higher and this is infuriating because I would have been able to get my scan today, in fact, I would be leaving to go to my scan right now if my nurse had checked my original blood work earlier. OK, but I can’t dwell on that, can I?

My new scan date (sounds, fun, right?) is Wednesday the 9th. My face is puffy and I feel weird and kind of gross. I am having manic symptoms instead of the tiredness and fatigue. It’s sort of a weird manic though. Having trouble concentrating, sleeping, and not able to really read or process things as easily. I am also, above all else, an emotional roller coaster! Granted I have had some jarring news about my scan being postponed and just overall being unsure of the outcome of that scan and also PMSing to add to all of this!

Yesterday was my worst day yet. Up until then I had been doing quite well. It just came crashing down on me and I broke down with all the loss, sadness, and self directed anger that had been building for weeks. My mom got the brunt of that and second in line was the bf. I know I need more right now. I know I’m not always this needy. I know this will pass. I also know that I need to stay present. That is the key to all of this, redirect my thinking back to the present and keep moving forward. The next time you see me, remind me of this and in turn I will remind you of the same. It kind of sounds “hokey” (no, not honkey), but if you think about it, it is so easy to get lost in thought, feeling, and things that are not happening in this moment and that’s when you step onto the roller coaster.  Once you step onto the roller coaster, it is harder to get off, but if you must get on you must also be able to get off or at least choose a small short one. Ride it for a short bit and then reroute and ride the lazy river ride into presence.

I just know this has helped me. I am feeling much better today. I allowed myself to ride the roller coaster (it was a longer one than I had realized) and then I slowed down and thought, really thought, about what was happening for me and realized that I had not been present in anything that was going on, therefore I felt out of control. Now, I am here, still out of control, but I am OK with that, and ever redirecting myself back into presence.

So there was a bit of a glich in my plans for my Whole Body Scan. The thyroid clinic nurse called me a little after 5 yesterday and wanted me to get more blood work! I was totally taken off guard. She let me know that it turns out my TSH levels were too low!!! What? I did not know this could happen. So I was standing outside of Trader Joe’s, freezing, when she kept asking me if I could make it to the lab today and I kept saying no, I was off campus at Trader Joe’s. I think she was trying to cover her ass because she was going to have to call the doctor instead and see what she wanted to do! So instead of taking my RAI pill today I took a blood test and will wait for results tomorrow. This means my scan will be postponed until next week sometime and I have to stay on this lame diet for at least 4-5 more days! It could be worse, right? I am just hoping my blood work is high enough and I can get the scan on Monday (this is all dependent on scheduling too). If not Monday, Wednesday would be the soonest I could get it done! Argh!

I will keep you posted as to what happens tomorrow. I am definitely feeling a bit hypo now. My face is puffy and I have been having a lot of trouble sleeping.

This time around being on the low iodine diet was a bit easier. With a little prodding from the bf I asked the local bakery what type of salt they use (kosher and non-iodized!) and if they used any iodate dough condition (no!). It has been nice to be able to eat a little bit of bread with my breakfasts and soups.

Yesterday I took a break from work and plopped in some ingredients to make tomato tortilla soup in my slow cooker. It turned out well!

I do have a strange rash on my neck and it seems to be just on the left side. At least the right side doesn’t itch, I still don’t have any feeling in my neck where they took the lymph nodes out, but maybe that’s a good thing.

Anyway, I am in the final stretch. Tomorrow I take my tiny dose of RAI for the Whole Body Scan on Friday and then I should know on Friday if I need to go in for treatment. Fingers crossed!

Well, I made my first smoothie with my new hand blender and I really like it! It worked really well. What I did was:

1 cup of mixed berries (raspberries, blueberries, blackberries)
1 1/2 cups of cranberry juice (I used unsweetend… no sugar cranberry juice) This makes it a little tart so don’t expect something super sweet.
2 bananas
and a cup of frozen strawberries.

Mix it all up in a blender and drink it up!

My taste-tester liked it too! The tartness added a little zing to it that I enjoyed. If you want a sweeter version get cranberry juice with sugar.

Today is my day to start making various LID baked goods. I have some baked goods lined up: Chocolate cake, Peanut butter cookies and bread. Then I will make vegetable broth (for the slow cooker soups I am planning on making while I am at work!) and Vegan pesto. I am going to try and make a couple of other things on Monday as well. Not sure just yet what I will make. Possibly another slow cooker delicacy!

I’ll post recipes of the slow cooker recipes when I have a good photo to show of what it looks like!

So my post yesterday explained a little about how hard I find it at times to explain all this thyroid cancer stuff to people.  Things come up, like WBS (most of us thyroid cancer patients know this as whole body scans) and RAI (or radioactive iodine treatment) that we as thyroid cancer patients learn to understand… eventually.  But how do you explain all this to your co-workers in a way that isn’t giving them too much information, but sharing something with them so they will understand that you might be going through some things, feeling tired, anxious or irritable because of any number of things related to thyroid stuff! I decided to share this email with a handful of people at work so they would somewhat understand why I might be acting a bit differently in the upcoming month.

My email:

Hi there,

I just wanted to update the team on what is happening with me in the next month and a half.  As most of you know, I was diagnosed with thyroid cancer last year and underwent surgery to remove my thyroid and all of the lymph nodes  on the right side of my neck. This should have removed all of the cancer, but I still have follow-up tests that I must go through each year/month etc.  As a result of having my thyroid removed I have to take thyroid medication daily to regulate my hormones, heart, metabolism etc. To make a long story short, I will have to stop taking my medication in the middle of January and will have a whole body scan to check to see if I am cancer free.  The result of stopping my medication is a very tired, emotional, and possibly anxious me.  Please keep this in mind if you see me acting funny! The best thing for you to do is to ask me how I am doing and to try to be understanding.

(omitted the last paragraph because it talks about logistics and job duties etc. not important to this post.)

Another year has gone by. I am hoping for the best for all of my family and friends. I know there will be struggles, uncertainty and pain, but there will also be love, laughter and smiles.

Right away I will be facing some fears. Next month I go in to have my year follow-up Whole Body Scan. Current Thyroid Cancer guidelines do not require everyone to have this year follow-up scan, but my doctor is being extra careful with me because of the extensive lymph node involvement of the cancer. It is still really strange to me saying, thinking or even writing the word cancer in relation to myself (still). I can see it in others as I talk about it too. That concerned optimism. I’ve learned a bit of wavering optimism (moves between smiles and worry lines) that moves into realism (a bit of irritability slips in) that morphs into uncertainty (a bit of crying pops up) that rolls into acceptance (I’m totally calm here) and then we go through the whole thing all over again. I’ve already moved through the cycle once at the end of 2010. I’m in the acceptance phase to begin 2011, which is nice (especially for the bf).

I think the hardest part of a lifelong disease, at least for me, is explaining it to people. I want to be able to simplify it. The disease itself can be explained by sending the person a link to a web page or giving them a pamphlet about it. The complexity comes in when you try to explain the emotions that come a long with the disease. Emotions that you thought were perhaps dormant or you didn’t even know you had. I have not felt such anger or despair in my life (aside from the death of a loved one) or felt the sting of uncertainty that lingers and will never go away the way it used to. Now, it is like a constant humming in my ear that I know is there. How do you explain this to someone who has never had to think about death in a very real sense. I’m not saying that I am dying, but the trauma of being told that you have cancer and not knowing what that meant, thinking you are going to die in your early 30’s, is not something that is easily translatable. I remember feeling like I couldn’t trust my doctor once she told me that I wasn’t going to die from this type of cancer. Besides all this, your thyroid messes with your hormones pretty badly. So when you have to stop taking your meds it’s really nerve wracking. I’m not sure what that will be like. Just another thing to be uncertain about, but somehow I will learn to accept that. That’s the only thing I can do.

So I’m going to share with you my Lid menu for the next round of Lid. I will be on it for 18 days this time and I want to be a bit more prepared than I was last time. I am a pescatarian (who eats eggs) so my options for protein are limited to freshwater fish, eggs, nuts and beans.

Last time I was on the diet I did not have enough variety prepared and I got really frustrated and CRANKY! I am hoping to cut down on that this time around, especially since I will be completely off my medication this time. I was able to get thyrogen injections last time.

OK, so here are some important points to help you understand this diet a bit better, but you can also see my earlier blog post for more information.

• No kidney beans, navy beans, or black eyed peas
• Basmati rice is best for this diet.
• I have to limit my grain and rice intake. The iodine content depends on the iodine content of the region where the grain was grown.
• The diet is a low-iodine diet, Not a low sodium diet. Remember: Low iodine has nothing to do with sodium. Sodium is in most foods. Table salt is sodium chloride, not sodium.

So, the things that I am going to prepare ahead of time are:
Lentil soup (using balsamic vinegar to give it some tang, freeze)
Make and freeze bags of black beans (or white beans)
Make tomato sauce (freeze or keep for up to a week in refrigerator)
Tomatoes
Garlic
Basil
Non-iodized salt

banana muffins

Chocolate cake
3 cups flour
5 tablespoons cocoa
2 cups sugar
2 teaspoons baking soda
1 teaspoon salt
¾ cup plus 3 tablespoons oil
2 tablespoons vinegar
1 tbsp vanilla
2 cup cold water
Combine first 5 ingredients. Add oil, vinegar, vanilla, and cold water. Mix slightly with mixer or by hand. Bake in 9 x 13 inch pan for 35-40 min at 350 degrees.

No-bake cookies (for baby shower while I’m on LID)
1 cup sugar
1 cup unsalted peanut butter
Pinch of non-iodized salt
4 tbsp oil or vegetable shortening
1/3 unsweetened cocoa
3 cups oats
You can adjust to your liking (more pb or coca etc)
Stir first 5 ingredients over low heat. When it is mixed well and creamy, add oats ½ cup at a time. Drop on waxed paper till cool… enjoy!

Peanut butter cookies (freeze)
1 cup peanut butter (unsalted)
1 cup sugar
2 egg whites
Mix ingredients. Roll into small balls and place on ungreased cookie sheet. Press with fork. Bake at 350 degrees for 10-12 minutes!)

Bread or pizza crust
In large mixing bowl, combine the following:
½ ounce yeast
2 cups warm water
Mix with for. Then add:
2 teaspoons non-iodized salt
2 teaspoons sugar
4 cups flour
Let dough rise 5 minutes. Then spread on 12 x 18 baking sheet using Pam or canola oil. Garnish as you please. Rosemary or Mrs. Dash. Bake at 400 degrees for 20 min or until golden brown.

Vegan pesto
4 cloves garlic
6 table spoons pine nuts, non-iodized salt, pepper
1 large handful fresh basil
6 table spoons extra virgin olive oil
Throw ingredients into blender, blend them, and then toss them into fresh spaghetti

Things to make on the fly!
Smoothies
Use: frozen berries, juice, sorbet, bananas
Salad dressing (balsamic vinegar and oil with garlic)
Salad fixings (greens, unsalted nuts, apple, grapes)
Mayonnaise (make with egg whites)

Things to have on hand:
Corn tortillas (without iodine)
Matzo crackers (unsalted)
Trader Joe’s apple butter
Unsalted peanut butter
Potatoes (make sure to peel before eating/cooking)
Unsalted nuts
Fruit and nut bars
Fruit salad
Eggs for (egg white omlete/scrambled eggs)
Potatoes (will have to peel before cooking)
greens (for salads)
veggies for stir fry or side

That’s it. I’ll keep you posted on how the cooking goes.  I am blocking out 2 days to get it all done… hope it turns out OK.

OK, so I am on day 5 of cytomel and things are OK. I was a little worried about hair loss and weight gain and so far I am fine with that stuff. Although the weight gain could be happening because of all the holiday foods I have been indulging in! It’s hard to resist cake, fudge, and hot chocolate. The most I’ve noticed as far as side effects go is that I feel flushed for an hour or two after I take the meds and I also just feel warm in general. The first day or two my hands were sweaty as well.  That has mostly gone away. Not sure if this is because I’m in Arizona and not used to 70 degree weather or if it is the meds, but I’ll be back in Oregon in a couple days so I’ll find out soon.

I was reading up on side effects and apparently Cytomel is taken by a lot of people for things like weight loss and depression. I only saw a few who took it for depression, but there seem to be a fair amount for the weight loss. Thought that was interesting.

Overall, I feel good.  I’m still a little nervous about those 2+ weeks that I will be completely off my medication and on the Low iodine diet, but for now I am doing well.

Also, Christmas was nice this year. Money, a few items of clothes, kitchen stuff and gift cards!  Tonight we are going to Las Noches De Las Luminarias and then I will get to hang out with some friends I’ve known since I was 12 or 13.

OK, so I “get” to stop taking my medication on Wednesday the 22nd!  This should be interesting.  I will be taking another medication that is supposed to combat the effects of not taking my levothyroxine.  It’s called Cytomel.  I think I will have to take it twice a day (I hope I remember that!).

Before I do that I will have to take a blood test to make sure my TSH levels are OK.  I changed my medication dosage again.  Feeling really good though.  I think we got to the right dose.  I’m taking two different doses M-Th is the higher dose and F-Sun is the lower.

I’ve been doing pretty OK considering the way my mind sort of runs away with things. I saw a movie a couple weeks ago that triggered some emotional reactions.  It was about clones who were created to donate their organs for people with terminal illnesses and things like cancer. I didn’t realize how it had impacted me at the time, but then I got a little freaked out about my upcoming tests. For me, this whole thing has been largely emotional/psychologically trying. I really haven’t had any major physical complications (weight gain, hair loss).  I’ve mostly had to deal with anxiety and depression. Even those have not been able to take hold of me for long.  A week here and there, but that is when I really need support from people.  Luckily, I have people in my life who are there for me.

Needless to say, I’m worried about the upcoming Whole Body Scan and hope that I come out clear.  If not, I know that I will go back into isolation for a week (including a 1-2 night hospital stay). I’ve never gone hypo before so I don’t know what to expect.  My Thyroid nurse says I will have 2-3 weeks that I will feel like I have the flu and probably be pretty tired. Oh, and I have to be on the Low Iodine Diet for 2 weeks too! I can keep wishing that these weren’t things that I need to think about, but that is not my reality.  I have to think about this and go through with the testings that come with it. I have to accept the uncertainty of life and keep accepting that. I must accept that I have to enjoy my life as much as I can. Especially when I am feeling well. If I don’t have that, I’m not sure what there is.