My one year whole body scan in Boston came back “perfect”.  I haven’t received the results of my blood test yet, but things look good!

I drank a tracer dose of radiation yesterday (in delicious KoolAid form!).  I had to get blood drawn first (see the bandage on my right arm).  Then I got my small dose of radiation.  Jay came with me and took a ton of pictures.

I go from very happy (left picture) to scared crapless (right picture)

Here is “Mmm…. KoolAid.”

“Please sir, can I have some more?”

Thursday I have off from going to Boston!  Then on Friday, I have to get a blood test for thyroglobulin, and then I have my whole body scan.

Friday afternoon Beers For Good went down to the local am radio station to record an ad for our brew fest. When I get the finished product, I’ll see if I can post it. It was a lot of fun, and made us (me, at least) feel very professional.

Tomorrow starts my week of cancer treatment at Mass General in Boston. Tomorrow and Tuesday I have to go into Boston to get a shot in the butt (insert inappropriate joke here).
I have to go into Boston just to get a shot! One tomorrow and one Tuesday. The shots each cost $2,000, so they are *special* cancer shots.

This week consists of:
Monday - Shot in the butt
Tuesday - Shot in the other cheek
Wednesday - Drink small amount of radiation. Meet with ladies from Hospice center in Waltham to confirm internship!
Thursday - No Boston! Two meetings in Fitchburg, both at Destare (I can’t get awayf rom that place!)
Friday - Whole Body Scan (WBS) which tests to see if there are any thyroid cells still in my body

Friday night - Fancy dinner to celebrate being done with my diet! (unless there ARE thyroid cells, then that’s a whole other story)

Wish me luck! Anyone in Boston wanna hang out any day? Let me know!

It’s May, so high 80 degree weather sounds just about right.

I’m going to the Cape for Memorial Day weekend, and it’s going to be about 15 degrees cooler. I’m thinking I just want to stay here to soak up some sun. But as my dad says when he sees me sun bathing, “What, was one kind of cancer not good enough for you?”

My low iodine diet starts on Monday.   Mom and I went to Trader Joe’s and Whole Foods today to stock up on salt free items.  We found  salsa, tortilla chips, dried fruit and spaghetti sauce that was all salt free!  I also got Lara Bars as snacks because they are delicious and contain nothing but nuts and fruit.  We also bought Spectrum Shortening so we can make pies that I can eat (I can’t eat regular Crisco -  Spectrum makes theirs with palm oil).  We got two of everything at Trader Joe’s.  I’m going away for the weekend with Jay* and his friends to Cape Cod, and I’ll be on my diet.  This way, I can bring tortilla chips and salsa as a snack, and spaghetti sauce if I get stuck for something to eat for dinner (I’m allowed to eat pasta).

We also bought eight bottles of wine (four for me, four for mom), and a six pack of beer for dad.  We spend around $90!  And by “we”  I mean “mom.”  But I’m very happy about the food we bought, even though this diet is still going to suck.  I’ve been spending lots of time at Jay’s house, so I plan on bringing one of my bread machines there so I always can have fresh bread there.

* Jay is the new guy I’m dating.  We started dating back in September, and then we stopped hanging out, and then we got back together in February.  He lives in Leominster, enjoys doing things outdoors (hiking, mountain biking, snow shoeing, snow boarding, etc.), and he makes me laugh.  Sometimes he calls me “Robo.”  He does not, however, understand my love for Honey Bunches of Oats.  But he’s cooked me dinner, and has let me drive his precious car.   I hope that covers it.

Mom, dad, and I went to the Stowe Weekend of Hope in Stowe, Vermont.  We left early Friday morning (7ish), and got home  Sunday night (also 7ish).  I had a great time, and obviously enjoyed it more than my parents did, because I am the one who is the cancer survivor.

There were 342 people with over 47 different kinds of cancer attending, and with their friends, families, and care takers, there were over 800 people there.

I got a very cool name tag that had my name and city and state, along with the word “Thyroid.”  I was the youngest cancer patient there (that I could see).  I think that I got a lot of looks from wearing my name tag.  You only wore a name tag if you were a cancer patient.  It was obvious from standing with my parents, that I was the one with cancer.  I want to keep wearing my name tag. 

Friday

Friday we arrived too late for me to go to the “Using the Power Of Your Mind” session with a hypnotherapist.  But I was able to go to our hotel and shower.  Then we went to The Bagel for lunch.  They were donating 10% of their profits back to Stowe Hope.  After lunch, we went up to the Trapp Family Lodge (the Trapp family is the real family from The Sound of Music) where we went to Cancer and Distress.  It was just ok.  2/5 stars.  I don’t feel like I really learned anything, but I made a fantastic joke when they were talking about suffering alone.  I said that because I blog about everything, I make all of you suffer with me!  I got a nice hearty chuckle.

At 4pm, we had the opening ceremony at the Stoweflake Resort.  We were welcomed and told that we can take this weekend to do whatever we want.  We can go to the sessions, hang out with our cancer friends, or just hang out in Stowe on the bike trail or in the restaurants.   This was our time to relax, and we were free to do whatever we wanted with our time.  I thought that was very nice, because they were paying for us to be there, and they didn’t care if we went to any of their cancer programs (but we did).

Friday night I went to the Dessert and Discussion about thyroid cancer.   All of us with ThyCa met at a Stowe restaurant and just talked about having ThyCa. I had a apple cobbler, and the apples were deliciously warm, and the ice cream was just cold enough to balance it out.

Saturday

Dad and I woke up and went for a 3 mile run down the mountain road, and my mom came and picked us up.  We immediately went to breakfast at the Hob Knob (where we were staying), and had delicious pancakes and toast.  We missed the Opening Ceremony at 9am because of our run, but I’m glad I went running.  We ran on Stowe’s beautiful bike trail.

At 10am, my sessions started with “Cancer and it’s relationship to Diet and Exercise.”  It wasn’t all that informative, but my parents are now aware they shouldn’t be eating cured meat because of the carcinogens.  I didn’t learn too much, except the dietitian said that Diet Soda was OK.  Yay! Oh, and also you should wash your fruits and veggies in warm water.

At 11am, I went by myself to “When a Parent Has Cancer: A Guide for Supporting Children and Teens Facing the Serious Illness of a Parent.“  I went to this because I am in school for counseling, and I thought it would be informative.  It was my favorite session of all that I went to.

At 12, I had Reiki done on me.  The woman said she could see dancing.  I dance a lot for fun, and I had been dancing that morning in the hotel room in front of my parents - who simply rolled their eyes at me.
At 12:30, the thyroid sessions began!  There was:

Thyroid Cancer is NOT the “Good Cancer:” Patient’s Perspective

Familial Forms of Non-Medullary Thyroid Cancer and Questions on the Management

Follow-up of Differentiated Thyroid Cancers, and The Role of Nuclear Medicine in Thryoid Cancer

They were all “meh.”  I didn’t learn anything from them, and next time will go to something else that I WILL learn from.  Instead, I could have gone to:

The Nature of Hope: Psychological, Spiritual, and Physical Dimensions
Massage Therapy as Complimentary Medicine
Living Through Cancer: Your Survivorship Plan
Cancer in the Elderly
The Importance of Exercise in Recovery

Those would have all been more educational, and I could use them in my career as a counselor.  I think that I already know enough about thyroid cancer.

After the sessions, we went to the Ben and Jerry’s Factory to get a tour.  It ended up being free cause we were with the Stowe Weekend of Hope.  We all got HUGE samples of Chunky Monkey at the end.  My dad said “The best thing about my daughter getting cancer is the free ice cream.”

At 6pm - we went to Jamie’s rental house (a fellow ThyCa) for a delicious dinner. Thank God she had made eggplant parmesan, because I was worried about having to eat meat!

At 7:30, we went back into town for a candle light service.  For a $5 donation, you could have a friend/family member’s name read during the service (either “in honor of” or “in memory of”), and then they would write them name on a bag, and have a candle inside of it.  While we were there, I wish we had done one for my dad’s mom:  In Honor of Mary Jo Streb.  We all got candles to carry and place on the altar, so when I placed mine down, I thought of her.

At 9pm, we went to The Rusty Nail where a band, Primitive Soul, was playing for us.  It was fun to go from church to a bar with everyone.

Sunday

My mom woke up up at 7:30, and said I didn’t have time for a run.  We had breakfast at 8am, and then didn’t have to be at the closing ceremony until 11.  I most definitely had time for a run.  D’Oh!

The closing ceremony was also on the Trapp Family property.  Behind the stage was beautiful mountains, and it was great.

Then we went to Burlington for lunch and a bit of shopping.  We got some food for my Low Iodine Diet which starts on May 14.  I’ve decided I won’t start eating meat until then, because while on my diet I can’t have any fake meat.  I can’t have soy or tofu, or anything - but I CAN have hamburg and chicken as long as they haven’t been cured with salt.

*

I most definitely want to go again next May.  It won’t be free, but they offer discounted rates at the hotels.  One I saw for only $59 a night, so discounted for two nights wouldn’t be bad at all!!  Next year, I will go to different sessions, and not ones for thyroid cancer.  I want to learn.  I won’t go to the closing ceremony because it was cold and windy, and lame.  We just listened to music and watched people dance.  Lame but beautiful.

I don’t think my parents will come next year.  I think that’s fine, because I know I enjoyed it more than they did.  I really felt like home there, and I knew that people wouldn’t think it was weird if I walked into church wearing a blanket (which I did), because everyone else had cancer, and they’re probably always cold too.

I was with my peeps.

At Thyroid Cancer Support Group last month, one of the members mentioned something about Stowe Hope Weekend.  It sounded neat, so I wrote it down and researched it a bit more.

Stowe Hope Weekend is an entire weekend in Stowe, Vermont for cancer survivors and their families and care givers.  It is a weekend for these cancer patients to spend time together, learning about their diseases.  It is the first weekend in May every year, and for first time attendees, staying at the hotels in Stowe is absolutely free.

I registered today, and my mom and I are going early Friday morning May 1, and staying until Sunday afternoon.  Our room is absolutely free for both of us (and my dad may come too, he’s not sure yet), we just had to put up a $50 deposit (to say we’re definitely coming).  Then, once we check in, we have the choice of getting the money back, or donating it to the weekend’s non profit organization so that they can use the money to fund next year’s event.

We are lucky enough to stay at a Bed and Breakfast, which my mom loves.  It is much more personal than a hotel, but because we’re staying for free, I doubt breakfast is included.  We will have the host family to chat with, so that is a nice touch.

Friday afternoon there are events and seminars that are for cancer patients only (my parents would just explore Stowe or hang out in the hotel or something).  On Saturday, there are various workshops to attend all day long.  There are four sessions, two in the morning, and then two after the lunch break.  Last year, there were several workshops that were dedicated specifically to thyroid cancer.

The only thing that we have to pay for is food.  I’m just planning on bringing a cooler and having milk and cereal for breakfast, and then rolls, deli meat (or PB & J if I want meat free), yogurt and fruit for lunch.  Then we can just go out for dinner on Friday and Saturday.  Friday night there is a “dessert and discussion” that you go to for specific cancers, but thyroid isn’t one of the ones listed.  So I don’t think I’m going to go to that  (I think it costs money).  Also, I bet the dessert won’t be awesome fruit salad or rhubarb pie, and really, are there better desserts out there?

I am very very excited to go, and I think it will be a lot of fun.  It will also be a nice little vacation before I have to start my low iodine diet, and prepare for my radiation treatment in late May (or early June, I might push it back).

I’ve come to the conclusion that my scar gets to be a crazy bright pink color when I:
a)- exercise
or
b)- drink alcohol

I’ve just returned from Destaré where I hung out with Niles and I brought both of us homemade cherry pie. I also enjoyed a glass of wine, and came home to this craziness on my neck:

I was talking to my mom about some health related symptoms at dinner last night, and she said “Hmmm.  You should probably get tested for diabetes.  Uncle Timmy has diabetes.” (Tim is her brother)

I gave her a blank stare.

Then, I said:

If I have diabetes AND cancer, I am

going to be SOOOO pissed.

And then I added, “But if I do have diabetes, I’m going to pronounce it ‘dia-bee-tus’  like Wilford Brimley on those commercials.”

My mom’s comeback, “Yes, you should be soooo pissed.  But first you should get tested.”

And so:

Dear Allah, Buddah, Jeebus, and Superman,

Please don’t let me have diabetes.  That would suck.  All I know about diabetes is from Turk on Scrubs.  They play games to guess his numbers.  I like games.  Please let me live a long and diabetes-free life playing games that have nothing to do with diabetes.

Lots o’ diabetes-free love,

Robin

When I was going through RAI and the low iodine diet, I kept a small journal.  I had gotten a journal on Schizophrenia at this Mental Health place, and it seemed perfect for a journal to use while I was going off my meds and on the special diet.  It asked questions about how I felt emotionally, how my body felt, and what I was doing to meet my treatment goals.

I just typed it all up, and if you’re interested in reading it (each day is pretty short, because I didn’t have much room to write - its just basically how I felt every day), it starts here.

Now that I’ve typed it up, I’ll add pictures that go along with my days!