The Doctors Say…

There are no side effects to taking this radioactive pill into my body… apparently they have never taken it themselves. 

I took my scan dose of radiation this morning and they had to give it to me in 4 pills!  They explained they had to give me the pediatric dose pills because they have had trouble getting the adult doses.  They used to get this from Canada but their nuke plant has been down for the last 6mos so they now have to get it from a plant in South Africa… I’m thinking is this stuff that dangerous that we don’t even make it on US soil!?  Apparently, yes.

So I took my pills like a trooper and I swear, even if the pills have no affect on normal people they completely enhance the effects of hypothyroidism.  Since taking them, I've been nauseous, feel extremely weak, fatigued and headachy, and absolutely cannot get warm. 

My hands, nose, and feet are literally like ice cubes and everything else is covered with 2-3 layers of clothing as well as 2 blankets!  I know I need to try to eat something solid but I barely got down a small bottle of organic fruit smoothie (yay for getting 3.75 servings of fruit/veg!) and frankly, being on the LID leaves little appetizing options that don’t take long to prep.  Right now my best options are air popped popcorn with no butter and a small amount of non-iodized salt or organic unsalted brown rice cakes with natural, unsalted peanut butter and banana slices.  Yummy. I’m thinking I should go with the rice cakes because the PB would give me some protein and the ‘nana would get me to almost 5 fruit/veg servings for the day.

Anyway, trying to muster up the strength to make some food and pack for my isolation location.  I’ve pretty much slept all day and will most likely eat and then sleep again for a while so maybe I can pack during the commercials of Glee, Mercy, Toddlers & Tiaras… and whatever other shows I'm DVR-ing tonight ;o)

Here We Go…

I love this graphic (a combo of a couple clip art designs mashed together by moi) because to me the image portrays strength, confidence, and a certain sass but also the intimidation, fear, and uncertainty that comes with having a radioactive chemical coursing through your body.

Tomorrow (Wednesday) I will get my scan dose of RAI (about 3-5 mCi) at the hospital in the morning and then I will come home. 

Thursday morning I will return to the hospital to get my scan at 7am.  Then I will review my scan with the Nuc Med Dr at 8am.  The scan should tell us how much thyroid tissue I still have left in my body.  Based on the amount of thyroid tissue left, he will determine the treatment dose of RAI (usually 100-200 mCi) which he will then prepare and at 1pm I'm scheduled to swallow the dose.  From what I've heard, I will have to stay there for a couple hours to make sure there are no immediate side effects that would require a hazmat team, then I will be released to go home. Well I'm not going home exactly… but I will be free to go and will be in isolation from everyone for 7 days and then I will be isolating from pregnant people and kids for another week.

Sometime during my isolation period, I will be scheduled for my post-treatment scan which should give us a very clear (more sensitive because of the high amount of RAI) picture where any remaining thyroid tissue is – goal is to see uptake only in the thyroid bed area.  If we see anything in the jaw, chest, spine, or lung area we could be looking at metastasis to the lymph nodes, bones, or lungs.

So it all begins tomorrow and then we wait once again!

YAC

YA  = Young Adults

YAC = Young Adult Cancer; defined for the purposes of this blog post as people who live with/go through/are diagnosed with cancer between the ages of 18-40.

Cancer is the 3rd leading cause of death in those aged 20-35 and over 70,000 YA’s are diagnosed each year in the US.  That is eight times more per year than pediatric aged patients.  Children and older adults with cancer are living longer than ever while survival rates for the 25-35yr old haven’t changed since 1975.  In some YA cancer groups [such as in certain lymphomas] the survival rates have actually decreased!  Why is this?

Several theories abound including more aggressive forms of cancers, treatments that aren’t geared toward this age group [too aggressive or not aggressive enough], diagnosis at a later stage because of lack of insurance or initial misdiagnosis because of age [“you are only __yrs you can’t have cancer!”], lack of support… Most YA’s with cancer find there is a gap in psychosocial and emotional support to address their specific needs and concerns [dating, raising young kids, newlyweds, infertility, careers, friends who don’t understand severe illness, gaps in insurance coverage, moving back in with parents again].

As a YA, you go to the doctor’s office or hospital you find yourself surrounded by children and animals painted on the walls or people your grandparent’s age.  You immediately feel out of place.  Support groups in your area can feel the same way or are only offered during the daytime while you are trying to work or can’t get a ride because your friends are working.  You feel you are the only one your age with this problem and you want and need to talk about your “special” issues with someone who understands.  Many patients can also feel isolated even within their family and/or friend groups because of the unique psychosocial and emotional challenges a cancer diagnosis can introduce.  You truly feel like no one can understand your point of view.

I know after I was diagnosed I became an internet researching fool.  It was literally the only thing I could focus on for weeks.  I also bought up any and every book geared toward the YAC population that I could find as well as a few others geared toward my particular cancer.  Most books and sites led me to new resources to check out and I now have a core list that I turn to when I need to seek out my peers in this journey. 

Here are my absolute favorite resources for YAC patients:

Crazy Sexy Cancer Tips & Crazy Sexy Cancer Survivor – book & workbook that are written in an upbeat and hilarious tone, you can relate and are engaged.  Kris Carr,  the author and YA with cancer herself, also has a movie of the same title as well as a blog and website.  There is a portion of the website similar to MySpace and you can connect with other YA’s with cancer.

Everything Changes – a book and blog by Kairol Rosenthal, a YA thyroid cancer patient, delves into the realities of the issues those specifically in their 20’s and 30’s go through when they have a cancer diagnosis.  Kairol is also a co-host on the Stupid Cancer Show which airs every Monday at 9pm.

The Stupid Cancer Show – a radio broadcast devoted specifically to advocacy for the YAC population. Hosted by Matthew Zachary and Kairol Rosenthal and sponsored by the i[2]y organization.

i[2]y – I’m Too Young For This website/organization and absolute wealth of information for YAC.

Planet Cancer – social networking site for YA’s [think MySpace for cancer patients and caregivers]

You Are My Hiding Place

I woke up this morning from a dream in which I was back in high school show choir – back to singing for the first time since my diagnosis of cancer [it’s a dream remember, it makes little sense].  We were singing the star spangled banner which we sang hundreds of times each year (or so it seemed) and I always had the high soprano part. Well in my dream, my voice seemed to be back and in perfect working order… until I got to the ending high part (you know, “laaand of the freeeeeeee”).  It wasn’t that my voice didn’t work but that I stopped singing because I was afraid it wouldn’t. Then I realized someone else was singing it and people were staring at me like I should be singing it.  I woke up crying and almost immediately thought of the song “You Are My Hiding Place” by Selah. [one of my faves] 

Apparently I have some fears surrounding my voice and I think they came to a head because my mom had Selah on when she was driving me around yesterday.  I have problems right now even listening to songs I would normally sing along with because I can’t/am not supposed to sing…

I haven’t been able to sing since May of this year – not really sing anyway. I was just starting to try my voice out again when I had my 2nd surgery. [side note: if you haven’t picked up on it, the thyroid is in the throat area]  I’m not sure if anyone can fully understand how much this rips me apart.  Singing was something I did when I was sad, happy, or just because.  I never thought I was very good at it, in fact I hate listening to recordings of myself, but it made me happy, it was part of who I was, and other people seemed to enjoy my singing.

I have been asked many times why I haven’t tried out for American Idol [too old… seriously!] or why I hadn’t recorded a CD.  I actually did record a CD about 3yrs ago to raise money for breast cancer – its not great as I was only in the studio for 1 day to record 10 songs (recording artists are in studio for 6-12mos on average) and didn’t have any special effects added or editing… but people bought it.  Some even bought multiple copies to give to their friends/family.  I uploaded a few samples from iLike if you want to check it out [see below].

• On My Knees
• Find It On The Wings
• Alabaster Box
• Lord I Believe In You
• I Will Rest In You

Christy K. on iLike

Anywho, I digress… best estimates are that I will be able to start singing again in December.  Yay that I should be able to sing along with Christmas carols!  But there will be no Christmas performances by me around town… no “O, Holy Night” at Christmas morning service at church.  That is still 2 months from now and until I can sing, being around music or listening to music is painful.  Until that time, I won’t know if everything works like it used to or if I have lost some of my register [upper is most likely to be affected] permanently.  I feel strongly that my singing voice won’t be stripped from me permanently which I am so thankful for… I just may not be a 1st soprano anymore.

God Wants You To Know

There is an application on Facebook called “God Wants You To Know.”  Basically this application sends you little things daily that are “messages from God” and you can choose to read them or not, post them to your profile or not.  Sometimes they are really general and seem fluffy and sometimes they can hit you in the gut at the most appropriate moments. 

Just a few days after my first surgery appointment regarding my lump I got the message “God wants you to know… that it’s OK.  Just rest for a moment. It's OK. Yes, things are crazy, yes, the world is going nuts. Yet, deep underneath the stormy waves, there, in the core of your being, there is... pure silence, pure love. And… it's… just… OK.” And it is ok.  I’ve had my moments of anxiety, worry, sadness… through it all I knew and still know that I will be ok.

The day before I was diagnosed, my message was: “Christina got a message that on this day, God wants her to know… that faith is exactly what it takes to get through uncertainty. Faith is not necessary when you know how things are going to work out, that's knowledge. It's in the time of unknowing that having faith is what sees you through to the other side. Faith is what gives you strength. Faith is that light in your heart that keeps on shining even when it's all darkness outside. Now is the time to keep that faith alive!”  My life was one big uncertainty at that point and has been now for the last 5 months.  As small as my light has gotten at points through this I believe that there is a reason for what I'm going through of course I don’t know what it is yet…

Yesterday, my message was “Christina got a message that on this day, God wants her to know… that your only real sin is not seeing God in everything you see. You think this is good so it comes from God; this is bad so it comes from devil. Forgetting that it was God who created everything in the first place, and that all of God's creations are perfect. And it was the devil who made you think of good and bad, made you doubt God's perfection. Look around yourself right now to see through your judgments the Divine in every little thing around you.”  This one hit me because I have been talking about this with several people over the past weeks.  Most recently I talked with my room mate Christy at the cancer retreat about doing gratitude journals.  During that weekend we were often asked to stop and notice the smaller things that sometimes get forgotten in the midst of a bigger crisis.  The past couple days have been pretty low for me and this idea had been all but forgotten.  I think its time to put this idea into practice…

Radioactive Woman!

So far, so good! My scan and radiation is still scheduled for next week Wednesday and Thursday.  If they push it back another week, I may just go ballistic on someone! For now, I'm counting down the next 8 days until I can have a slice of pizza, take my thyroid hormone, and begin my journey back to normalcy! Granted I will start returning to “normal” while I'm radioactive and in isolation but it will be a couple weeks before my TSH stabilizes a bit. 

So here is the official schedule:

• Wednesday September 30th – 6:45am @ the hospital – receive scan dose of RAI at 7am.
• Thursday October 1st – 6:45am @ the hospital –  Whole Body Scan @ 7-8am, consult with Dr. Nuke @ 8am to go over scan results and dosing, Radioactive Iodine Ablation dose @ 1-3pm (approx), head to an undisclosed location and begin isolation, baking soda rinses, lemon drop shots…oops wishful thinking!
• Friday October 2nd – continue isolation, LID, lemon drops every 15mins, and baking soda rinses every 30-60mins, try not to puke.
• Saturday October 3rd – remain in isolation, start taking my levothyroxine again (yay!) and eat whatever I want again (YAY!!!)
• October 3-7th – continue isolation
• October 8th – appointment with Dr to discuss recovery, labs, prognosis, follow-up scans/tests
• October 8-11th – continue partial isolation (stay away from pregnant women, babies, and children)

A Little Sleep Please?

The past couple days have been pretty bad for me… I find that I'm not feeling very cheery at all and am welcoming the cloudy skies (hoping for some storms soon!) because they match my mood perfectly. 

I am in a state of extreme fatigue, as most of you have probably gathered, but have been finding it increasingly hard to sleep. 

This is what my nights are like: finally fall asleep between midnight and 1am, wake up between 3-4am and stay awake for about an hour or so, fall asleep again between 4-5am, wake up between 7-8am and then I give up on trying to go back to sleep.  I know I'm not getting enough sleep, sometimes I am able to take a nap during the day which helps some but is still only an hour or so at a time.  Well after a few days of sleeping like this, then I seem to crash and can do nothing but sleep.  Its getting ridiculous!

At some point I thought I had read something about insomnia being linked to a hypothyroid state but of course now can’t find it… I do have references that state when you are hypothyroid you are unable to reach “stage 4” sleep, the deepest, most restful level of sleep which only contributes to the fatigue.  Could explain why I haven’t dreamt in years except on rare occasions?

I’ve also been in pain pretty much constantly for the past couple days.  I try to ignore it all day but last night it was too much so I took some motrin and just curled up into a ball.  This morning is pretty much the same as last night.  I feel like I have arthritis or something and feel like jumping out of my skin. Its superfun.

I can’t wait until this is all over!

Bored, Bored, Bored

The title pretty much says it all!

I’m bored of being cooped up in the house all day with no one visiting… bored of my stupid LID… bored of the repetitive TV shows… bored of the internet (gasp!)…

Dreaming of the moment I can eat real food again…

My brain isn’t working right so I can’t focus enough to read books, attempt to scrapbook, organize fundraisers, or even remember if I took my Tums 2 hours ago (no joke). I can’t even finish a sentence without losing a thought or forgetting an important detail!

My parents and Grandpa came by last night to restock my LID approved food stuffs and after not being able to find unsalted/unbuttered/no soy involved popcorn, they decided to buy me an air popper instead! So now I have the ability to make some popcorn to watch movies but I am a total disaster in the kitchen at the moment too!

I have over a week ahead of me where the hypo symptoms will continue to get progressively worse and then I go into complete isolation for 7-10 days… I think I just may go completely nutso by that point!

Things I’ve Learned…

…from watching entirely too much TV the past 3 weeks!

• I should never travel to Africa or the Amazon (I Survived!, I Shouldn’t Be Alive, Captured!)
• There are some super nasty critters out there (Monsters Inside Me)
• I still believe in ghosts/spirits/demons, the unexplained, and the whole good vs. evil thing (A Haunting, Ghost Hunters, Ghost Hunters International, Destination Truth, Angel, Warehouse 13, Fringe, Drop Dead Diva, and several history channel documentaries)
• The good guys are always smarter than the bad guys (Law & Order [all], CSI [all], Cold Case, Cold Case Files, Bones)
• There are real life people who are larger than life (Real Housewives of Atlanta, Rachel Zoe Project, Kourtney & Khloe Take Miami, The Hills)
• Medical anything is still super interesting to me (ER, Mystery Diagnosis, Trauma: Life in the ER, House, MD.)
• I would not survive a world catastrophe because I wouldn’t have access to my thyroid medication; perhaps I should stockpile (The Colony)
• All families are weird, not just mine (Jon & Kate Plus 8, 18 Kids and Counting, Super Nanny, Nanny 911, Hoarders, Intervention)
• I will always be a choir geek at heart (Glee)

And the most important one of all:

• I haven’t had enough visitors to distract me from wasting my brain on TV!

  My Couch Potato Kitty Friends : Moses Jean and Gilbert Sullivan

Up In The Air

Things here are a bit crazy at the moment! 

I was finally settling into the fact that things were rolling full steam ahead when I talked to my dad and he says “Have you talked to your mom lately?  Your radiation was changed to next week.”  Excuse me, what?!  So I call my mom’s cell trying to find out the info but she’s busy, busy, busy because its Monday at the Peds office and its nearly closing time.  So I hang up and wait… (tip: mom doesn’t know how to check VM on her cell)

I was rewarded for my patience with a call from her within about 15 mins. YAY!  Basically I ask her what is going on?! And here is the scoop as I know it:

She called my Dr’s office this morning to get some questions answered and told them I was not myself (ie: hypo hell). When the hospital called the Dr’s office to tell them they had to change things, they must have relayed that I'm not myself and to stress my mom out with the details. My mom got a call from the hospital saying my scan dose is now Sept 30th and scan, consult and ablation on Oct 1st! Then the Dr’s office called my mom and said that my Dr is mad because he knows how extremely hypo I will get (possible hospitalization levels) and they are trying to get it worked out for sooner, they will call back with any details/changes.

All this happened while I was blissfully unaware, passed out on my couch.

I definitely will not be going to the hospital tomorrow morning at 6:45am for my scan dose and I will definitely not be getting my ablation on Wed this week. That is about all I know for certain at this point.

Hypo H-E-L-L

I apologize for the language but that is really the only good word to describe it.  So far I think I've been a good sport about what my body is going through but I'm going to claim a hypo symptom and be moody and complainey for a post.  According to the Mayo Clinic, the symptoms of hypothyroidism are (with some comments from other sources):

Fatigue (with insomnia)

Sluggishness

Increased sensitivity to cold (more like intolerance)

Constipation

Pale, dry skin

A puffy face

Hoarse voice

An elevated blood cholesterol level

Unexplained weight gain

Muscle aches, tenderness and stiffness (also numbness)

Pain, stiffness or swelling in your joints

Muscle weakness

Heavier than normal menstrual periods

Brittle fingernails and hair (including hair loss)

Depression (also forgetfulness, poor cognition)

As hypothyroidism is left untreated, symptoms become more severe.  If left unchecked for a long period of time(shorter time if you have no thyroid and no meds), you get lowered blood pressure, decreased breathing, decreased body temp, unresponsiveness, coma and even death.  This is the reason that my RAI was scheduled so quickly when they found my TSH was rising a bit faster than “normal.” (took me 2.5 weeks to get to 35.67, this is expected at 3-4 weeks)  So who knows what I am today TSH-wise but I'm guessing I'm nearing the 60.0-80.0 range now. (purely a guess based on being told once it starts rising it rises more quickly and the fact my TSH was drawn 4 days ago now…)

So currently I can say that I am experiencing all but 2 of the above symptoms and those 2 are a maybe… (its not that time of the month and i haven’t had a cholesterol test in the last week) I am feeling absolutely miserable! The fatigue is not merely feeling tired its more like I don’t think I have enough energy to sit up – not exaggerating. And when I do get some blessed sleep, I wake up often, find it hard to get back to sleep, and get no relief from the fatigue.  As of today I feel like lifting my hand is like trying to lift it through a mud pack.  My muscles and joints ache constantly, especially my wrists. My voice is getting more hoarse (but I can blame that on the wedding this weekend can’t I?). My cheeks are puffy and I don’t even want to go near a scale…

Ok so I can deal with all this because I know its temporary (but will be repeated yearly for scans – oh fun) but the one thing that is bothering me most is the hair loss.  I know, I know… I shouldn’t complain because I'm not getting chemo and won’t go completely bald! I’m so thankful and lucky in that respect… but if I hadn’t started with very thick hair, I believe I would be nearly completely bald at this point!  I have pictures for your comparison, both were taken approximately the same time of day give or take an hour.

Taken the week before surgery w/ thick hair	Taken today almost 3 weeks hypothyroid

So as stressful as getting RAI sooner than expected is, I'm thankful that it will be done and I can start taking my synthetic thyroid hormones again so I can start feeling like normal and grow back my hair!!!

Gettin’ Dosed!

The surgeon’s office called this morning to tell me that my TSH was 35.67 and that my Nuclear Med stuff has all been scheduled! I will be getting my tracer (scan) dose of RAI on Tuesday and have my WBS, Consult, & Ablation dose RAI on Wednesday! Stop the bus – WHAT?! I’m not ready!!!

Everything I had heard said that it was hard to get into Nuc Med so expect at least a week lead time – guess that isn’t so at SH! Needless to say, I still have to figure out where I'm going to go for isolation, I haven’t been on the LID, and I have a wedding out-of-town to go to this weekend so I feel like there is no time to prepare or start cleansing my body of iodine! I have to believe that this is His timing and not mine… and that everything is going according to His plan…

So here is the timeline:

• Tuesday 22nd 6:45am (about 1/2hr-1hr) – head to the hospital, get my tracer dose of RAI, go home.
• Wednesday 23rd 6:45am (ALL DAY) – head to the hospital, WBS at 7am (2hrs), consult with Nuclear Medicine Dr. to discuss scan results and RAI dosing at 1pm, sometime in the afternoon receive my ablation dose of RAI.
• Wednesday 23rd – Tuesday 29th – ISOLATION
• Wednesday 30th (??) – Post-Ablation WBS – this one hasn’t been scheduled yet.

After this is all done, I can start back on the thyroid hormone meds and start bringing myself out of this extreme hypothyroid state (expecting TSH in the 60-80’s by RAI time). I expect for this to take about a week before I feel normal-ish again.

So I'm currently a bit stressed. Being gone this weekend for the wedding is making things a bit more stressful too. I have a lot to do & prep before Tuesday but I'm sure that everything will work out.

At least my hair will stop falling out sooner, right? Its been getting pretty thin so I was starting to worry!

Lab Rat

So ok, I realize I haven’t done an update on how I'm doing physically in a while. Mostly, there hasn’t been much to tell… Last week I got my labs drawn to check my calcium and my Dr hasn’t called to tell me I can back off on the Tums yet so it must not be normal yet. I plan on calling next week to see if I can start tapering the dose and/or if I need another level drawn soon.

Today I got my labs drawn to check my thyroid stimulating hormone (TSH) and I hope to hear about that on Monday. We need it to be at 30.00 or higher in order to schedule my pre-ablation WBS, radioactive iodine ablation, and post-ablation scans with Nuclear Medicine. They won’t even consider talking with you until you get to that point. I’m feeling positive that my TSH has been rising because I've been experiencing hypothyroid symptoms more acutely this week. I’ve been sleeping 12-14hrs/day, hair is falling out regularly, I've stopped feeling like I have hot flashes, and have stopped running a constant temp of 99F+ (that was annoying for over a week).

Yesterday and today I've been COLD. Yes, I know the weather has cooled a bit but I live on the 3rd floor, have my windows shut, layers of 3 shirts and 2 blankets and my hands and feet cannot get warm. I probably should try some socks too but I like the barefoot freedom of summer and its not officially fall… yet! I’ve also started getting the stupid body aches and headaches… and my mom and dad think I'm not making much sense or remembering things they told me so there goes my cognition! (sorry if the blog doesn’t make sense in the next couple weeks! lol) I have noticed it’s harder to concentrate on anything for more than a few minutes so its a good thing I'm a list-maker!

Other than that, I'm hot on the trail for sugar free lemon drops – I have to eat one every 15 minutes when going through RAI for the first 48hrs, even waking every couple hours overnight to eat them. The sugar ones can make you nauseated (hazmat team needed) and the increased acidity of saliva caused by the RAI is hard on teeth so adding sugar into the mix means cavity city. The parotid glands also tend to have swelling and blockage issues after RAI so having these on-hand to stimulate salivation is key. I also need to remember to buy baking soda to do rinses several times a day to neutralize some of the acid. The stuff I have is OLD and I'm NOT putting it in my mouth!

Still trying to figure out what to do after RAI too but all will be clear in time I guess! I’m not worrying too much about it until I know when it will be, hence why I'm praying my TSH went up, uP, UP!

All Good Things… (last day of retreat)

Last day of retreat went quickly. We started out with a morning service of reflection and then went up to pack up our bags. We then had a drumming circle about unity. I have done this once before in a corporate setting with 400 plus people in suits playing the djembe. This was definitely a more laid back experience! After this we had our closing circle and took some group pictures and we were back to the real world!

I signed up for this weekend to get away from all the stress I've been going through these past months. I wanted a quiet weekend away where I could process things and just be in quiet reflection, maybe getting a massage in the process. What I got out of it was so much more…

…and I can Fly… (retreat day 2)

Day 2 on the retreat started early with breakfast at 7:30am… my roomie and I decided to wake up at 7:30 and be down just in time to grab a quick bite before the first session at 9am. :) Excellent plan!

I think this was one of my favorite days because it was about “Traveling Your Cancer Journey.”  We first heard everyone’s full story and then talked about the losses we have experienced/are experiencing along the way.  A couple things struck me… most all of the breast cancer survivors had found their own lump and were not diagnosed by a mammo (planting the question, why don’t we have a better detection tool?! while also emphasizing the importance of self exams), and a very common thread is that cancer strengthens some relationships and dissolves others completely.  I know I posted very early on about this very thing and I guess it was reassuring that others have experienced the same thing.

The rest of the day focused on healing through gentle yoga, nature walk, massage, craft time, & energy healing (similar to Reiki) therapy. I had an interesting experience with the energy healer.  After a very brief description of my “problem” she started doing her thing and went down to my feet to mix a bit of reflexology into the healing process.  She pushed on my feet and the only place that was tender was the thyroid point so she said that I would be completely fine and that my cancer was completely contained to my thyroid!  I guess I have to wait for the WBS to prove that one!  On our nature walk we saw the trees changing, flowers blooming, and a sailboat regatta on Lake Michigan.  It was a very relaxing walk around the campus and the weather was absolutely beautiful for fall in Michigan!  After the walk I went to get my massage (which of course was lovely) and then went out to build by bird house.  Here is a pic of my birdhouse – its the red one. Shocker I know, its not the pink one!  After I finished my birdhouse it was time for my energy healing session and then on to dinner!  After dinner we worked on making quilts that will be displayed at local cancer centers and then we had a bonfire and ‘smores.  What is camp without a bonfire right?!  Christy and I were out by the fire with a few other people until after midnight and then we decided it was time to turn in… only a half day left and I don’t think anyone wanted the weekend to end! 

I am a Bluebird…

Warning: Expect the next few days worth of posts to be about my Bluebird Cancer Retreat experiences :)

I arrived at Camp Geneva around 12:30p on Friday a bit nervous, not knowing anyone or what to expect.  After a quick check-in, I was given a shirt & goodie bag and was informed my roomie was also named Christy (spelled the same!).  I scanned the room and sat at a full table (my tendency would be to sit at a vacant one) and immediately felt at ease.  They were all so open and easy to talk to, I knew the weekend would be wonderful and I started to relax.

When most people had checked in, we started the weekend with opening circle (mini intros) and an art therapy piece based on the weekend’s theme of “The Road Less Traveled.”  (side note: art therapy had to be done with non-dominant hand and there will be no pictures of this)  We were introduced to the retreat staff and volunteers and then got some free time to explore our room and surroundings.  When it was time to start again, we were introduced to Sister Sue Tracy and a session called “Celebrate Life.”  Sister Sue, a nun and 4 time cancer survivor, quickly had us all laughing with her stories.  I’m sure I will post more about her on a later date! Then we got some more free time and I decided to head to the beach!

Those steps were so much easier going down then up and I was immediately reminded that I was only 1.5weeks out from having surgery!  It was worth it though because the sound of the water was relaxing and the sand was warm on my feet. :)

After dinner we shared our intros once more (some people arrived later because of treatments) and were treated to ice cream margaritas and hot stone aromatherapy foot soaks and essential oil foot rubs… ahhhh bliss!

As I was drifting off to sleep, I was reflecting on our group.  We had about 19 (?) participants, all women (not a requirement, just turned out that way), aged 20’s-80’s, with diagnoses of: Hodgkin's lymphoma, non-Hodgkin's lymphoma, metastatic melanoma, and ovarian, uterine, vaginal, brain, thyroid, peritoneum, and breast cancers. We were all in different stages of treatments and diagnosis (first timers to multiple reoccurrences)… But the overwhelming tone was not one of sadness or despair but of hope, joy and positivity… We were all connected immediately and simply by one word: cancer.

Outtie

ps – i’m heading out tomorrow morning for a Cancer Retreat at Camp Geneva on the shores of Lake Michigan. I won’t be posting until I get back (Sunday) but i’m sure to have some fun stories!

Does Cancer Make You Strong?

Recently an acquaintance of mine, Kairol Rosenthal (author of Everything Changes: An Insiders Guide to Cancer in Your 20’s and 30’s) wrote a blog post on this very question. She asked her fellow cancer buddies if they like being called “strong.” Apparently this is a burning issue because the New York Times Well Blog picked up on her post and expanded it.

Overwhelmingly, cancer survivors say that they do not like to be called “strong” or to be told “God only gives you what you can handle.” One of my favorite comebacks for the latter statement comes from Mother Teresa who said, “I wish he didn’t trust me so much!”

Calling a cancer patient “strong” makes it seem like they are no longer entitled to crying into their pillows or screaming in helpless rage at their situation. Being told you have to be strong is a heck of a lot of pressure for someone who already has more than enough stress in their life. And don’t even get me started on the “you have to be strong for so-and-so because this is really hard on them…”! Excuse me, can we rewind and think about that for a second? I am not naive enough to believe that I am the only one affected by my cancer but come on! This deadly cellular anomaly is growing inside my body, affecting my life forever. I deserve to be a bit selfish and self-involved while going through this and if I'm not feeling up to fake smiling all the time then let me be!

This may be a difficult idea for those who haven’t been there done that to understand because they feel that they are saying the right things. Believe me, we appreciate the fact that the situation sucks and know that sometimes you don’t know what to say! Sometimes I don’t even know what to say and resort to snarky comebacks (usually only in my head because I’m trying to be polite). I even stated a top 15 not to say in an earlier post. There are so many faux pas in the “What not to say to a cancer patient” category (I've heard some unbelievably idiotic doozies in internet forums)… but the truth is, what you shouldn’t say to one person may be the exact right thing to say to another.

Usually, the old adage “honesty is the best policy” is true. I would much rather have a frank discussion with someone about how much the situation sucks or how I’m really feeling than getting the awkward polite statements. But that’s me, I’m unusually open about this whole ordeal and I don’t mind talking to anyone that really wants to know the truth of the matter. Just ask me!

Is That True?!

I’ve found myself saying or thinking this exact thing so many times over the past few days. If any of you have gone through or know someone who has gone through a cancerland journey, maybe you can relate to the confusion that happens when you start reading up on a particular disease. One study says this another says that… several studies say this but overall the medical community doesn’t endorse those thoughts… With so much science and research out there you would think there would be more concrete answers! I guess it goes to show the awesome wonder that is the human body.

Some of the questions I have been asking myself (and the Internet research engines) if they are true:

• Can RAI really kick you into premature menopause?
• Can getting pregnant (in the future) kick up a recurrence of my cancer?
• Do most young people with one primary cancer get another primary cancer? (I personally know 4 women for whom this is true)
• Since my tumor had burst, did the cancerous cells spread out all over the left side of my neck?
• Does the LID really work to increase the effectiveness of RAI?
• Will my hair stop falling out? (it isn’t as bad as having chemo but every time i touch my head, i come back with hair in my hand)

There are a lot more i’m sure, I just can’t think of them now! They tend to pop in and out all day…

All Clear! (well kind of…)

I had a busy day with 2 doctor appointments! Grandpa was my chauffer to the first and mom drove me to the second.

First one was with the dentist to get my new retainer. His assistant saw my stitches and steri-strips and asked what happened to my neck (I had a diamond necklace surgically implanted so no one could steal it). My dentist knows what has been going on and he asked how I was doing and what the results were. I said I didn’t know yet but I was getting my results (hopefully) and my stitches taken out in the afternoon. Then he graciously offered to take my stitches out and I told him no way, I still wanted to like him after the appointment!

Then I had lunch with Grandpa and mom at Russ’ where they did the handoff. Then mom and I headed up to the Surgeon’s office to get my stitches pulled out and to hear the results of my pathology. He came into the room and immediately said that my right lobe and lymph node were all clear of cancer! YAY! I was still digesting this news as he pulled out the stitch. Then he did some reflex tests because of my calcium issues and gave me lab slips to check my calcium (today) and my TSH (next week). I’m still on the Tums but he did mention tapering the dose if this test comes back good!

Future plan: I'm still having the RAI because of the tumor on the left lobe - we still don’t know if it spread on that side to lymph nodes, etc. I will have a whole body scan with a tracer dose of RAI and whatever that shows determines the dosage for the real RAI. After I get the real deal RAI I will get another super sensitive whole body scan – this one will tell us if even a tiny amount of cancer went anywhere else, and the real deal RAI will kill it.

So its now a waiting game until my TSH levels go above the 30’s. (I’m starting from 0.34), at which time we can schedule the first scan and appointment with nuclear medicine (the thyroid cancer version of chemo/radiation).

	Z scar & swelling 3 days after surgery
scar & swelling 1 week after surgery with stitches removed a

Calci-YUM!

Tum, Tum, Tum, Tum….TUMS!

So my calcium is still all out of whack! I get crazy tingling in my hands, arms, feet… it basically feels like my hand fell asleep and is starting to wake back up almost constantly. The Dr. said that if I got this sensation in both hands and around my mouth that I would have to get checked ASAP. So far i’ve had both hands, one hand & one foot, or just my mouth tingling - but never 2 limbs plus my mouth at the same time. Believe me I will be having a chat with the Dr on Tuesday when my stitches get pulled out because this is nuts!

To combat a calcium plunge, i’ve been dutifully chewing on 2 peppermint Tums tablets every 4hours while i’m awake. That equals 8 peppermint Tums a day or approximately 160% of my daily recommended value. Even this cannot stop the tingling and I wonder if I will ever be able to stop chomping on the chewable chalky peppermint goodness that is Tums? I’m thinking I must have some parathyroid damage so is it permanent or are they in a recovery period? Only time will tell… in the meantime, its time for my 7th & 8th breath refreshers of the day!

Hit by a Truck

Ok so i’ve been feeling pretty good overall since surgery. There has been the “normal” pain and swelling but my voice has only been a little hoarse and I didn’t have the vicodin nightmare that happened after the last surgery. Feeling good, however, can be a fleeting thing…

After I got home from the hospital, I pretty much spent the day sleeping on the couch while my dad watched Top Chef (and dozed off) on my loveseat. So when my mom came over after work I was wide awake and feeling good. I was so awake that I stayed up reading after my mom went to bed. (Mom is staying with me for a few nights – good thing I have a guest room!) I woke up once during the night but took some meds and got a new ice pack and went back to bed until morning. Thursday morning I was able to take of the bandage and shower for the first time since Tuesday morning. The bandage was taped on really well and it hurt to pull off. I’m also slightly allergic to surgical tape adhesives so it had burned my skin in one place. It didn’t really help that the betadine also makes my skin break out - yay for being a blonde with fair, sensitive skin! The shower was wonderful though and I felt so much better after washing my hair!

My mom had the day off and my aunt Pat came over so we could have a girls day. We looked at pictures, talked, watched Confessions of a Shopaholic and ate Chinese food. I was sitting up and talking almost the entire time but still felt good. When she left, Vanessa and Lindsay stopped by for a visit and I was up and talking for another couple hours but still felt good. Then my mom and I had dinner and I finally laid down to relax a bit… My neck was throbbing and my ice packs couldn’t get cold enough. It was at that point that I knew I had done too much, too soon. I took some extra meds and got out a heavy duty ice pack and slept like a rock.

I woke up this morning and feel exhausted and bruised from the bridge of my nose to my waist – basically like i’ve been hit by a truck! Today’s plan is to rest all day so I can be up for any visitors that stop by tonight, and to also save up some energy so I can visit a little with family this holiday weekend. If i’m feeling up to it, my mom is going to bring me up to Gma/Gpa K’s house in Newaygo for a few hours on Sunday and to Gpa S’s BBQ on Monday. That’s the goal at least!

	Flowers, cards, magazines, scrapbook supplies… My family and friends rock!

Surgery #2 Update

I'm coming off some darvocet so bear with me ;o)

I know you are anxiously awaiting my update on surgery so here it goes! We got to the hospital pretty much on time (6:55am), picked up Grandpa in the lobby and headed to the surgery check in. We were surprised to find a nearly empty surgical check-in room! Either everyone was much earlier than me or much later or... they just didn't have a big schedule? Anyway, once I got checked in I waited maybe 10 minutes before getting called back to the pre-pre-surgery area. (btw i like their scale, it said i was 4lbs lighter than my home one) When we got back there I was told to pee in a cup (urine preg, required on all women of age) and disrobe and then wait. So wait we did... About 8am they took me to the pre-surgery area where my IV was started in my hand (ouch) and I chatted with my surgeon and anesthesiologists briefly. Then I got some happy medicine, dropped my parents off at the surgical waiting room, and remember being told to move to the other bed and then I was out!

I woke up in PACU to someone in the next bed moaning like crazy. I didn't make a sound and I think I startled the nurse when she saw my eyes were open. She asked if I was doing ok, I said yes but it was starting to hurt so off she went to get some meds. She came back with toradol and dilaudid - the good stuff - and I was feeling good in a matter of seconds. My mom came back to see me and it seemed like just a few minutes later I was off to my room! (this was maybe noonish?)

When I arrived on 5West I was promptly told that I had the best room on the floor -5 West has all private rooms and is usually reserved for hysterectomy patients (my connections are in the OBGYN world) and the views of downtown were amazing!

I was also near the helipad so I saw aeromed land and take off a few times. By this time I had several visitors in my room - Gma & Gpa K, Gpa S, Mom, Dad, Katie.. I started drifting off to sleep and they headed to grab lunch. Everyone was amazed that I was talking so well - much better than last time but this time they didn't have to scrape my vocal cord. I was armed with my new pink quilt (from work) and pink pillowcase (from Jessa) and all the nurses & techs loved it!

So basically my stay went like this: I had my vitals taken every 30mins-1hr, was poked by lab for calcium levels every 4-6hrs and got up to walk a couple times that night. They kept me packed with ice to keep some of the swelling down but I still have chubby cheeks :) Someone in surgery was a bit overzealous because the pulse ox was on so tight it had bent my nail down – yeah that hurt a bit. Then I noticed that my nose hurts a little because I have a bruise on the bridge of my nose and some slight bruising under my eyes from the breathing tube/mask. I also had betadine from my nose to the backs of my shoulders to about 5 inches below my collarbone. I guess I would rather have them be overly cautious!?

This morning I was told that although my calcium levels were still in the “good” range, they had continued to drop during my stay. My surgeon wanted them to stabilize before sending me home so I had Tums ordered and another blood draw. One of the side effects of my surgery is damage to the parathyroid glands which control blood calcium levels. Hypoparathyroidism (hypocalcemia plus hyperphosphatemia) can cause numbness & tingling, muscle cramps and in severe cases seizures. So you can see why they were concerned with my levels dropping… It means that my parathyroid glands took a bit of a beating through both surgeries. My last blood draw showed that my levels were stabilized after the Tums so I was able to come home!

Now i’m home and ready to ice and rest once again. I have darvocet for pain and have to take 2 Tums 4 times a day (8 total per day) until further notice. I have band aids in both elbows and on both hands from blood draws and IV’s and of course the giant bandage on my neck! :) That can come off tomorrow when I can finally shower so i’m eager to take a peek behind the “curtain.” I will be back at the Dr. on Tuesday to get my stitch out and then we start more blood draws to see how fast my TSH rises… hopefully it goes fast so I can get my RAI and be done!

Random Thoughts

I thought this was hilarious...why not add a bit of humor to surgery day? (ps i set this to auto post so don't get upset this isn't an update on my post-surgery status!)

Random thoughts from people our age...

-I wish Google Maps had an "Avoid Ghetto" routing option.

-More often than not, when someone is telling me a story all I can think about is that I can't wait for them to finish so that I can tell my own story that's not only better, but also more directly involves me.

-Nothing sucks more than that moment during an argument when you realize you're wrong.

-Have you ever been walking down the street and realized that you're going in the complete opposite direction of where you are supposed to be going? But instead of just turning a 180 and walking back in the direction from which you came, you have to first do something like check your watch or phone or make a grand arm gesture and mutter to yourself to ensure that no one in the surrounding area thinks you're crazy by randomly switching directions on the sidewalk.

-I totally take back all those times I didn't want to nap when I was younger.

-Is it just me, or are 80% of the people in the "people you may know"feature on Facebook people that I do know, but I deliberately choose not to be friends with?

-Do you remember when you were a kid, playing Nintendo and it wouldn't work? You take the cartridge out, blow in it and that would magically fix the problem. Every kid in America did that, but how did we all know how to fix the problem? There was no internet or message boards or FAQ's. We just figured it out. Today's kids are soft.

-There is a great need for sarcasm font.

-Sometimes, I'll watch a movie that I watched when I was younger and suddenly realize I had no idea what the f was going on when I first saw it.

-I think everyone has a movie that they love so much, it actually becomes stressful to watch it with other people. I'll end up wasting 90 minutes shiftily glancing around to confirm that everyone's laughing at the right parts, then making sure I laugh just a little bit harder (and a millisecond earlier) to prove that I'm still the only one who really, really gets it.

-How the hell are you supposed to fold a fitted sheet?

-I would rather try to carry 10 plastic grocery bags in each hand than take 2 trips to bring my groceries in.

-The only time I look forward to a red light is when I’m trying to finish a text.

- A recent study has shown that playing beer pong contributes to the spread of mono and the flu. Yeah, if you suck at it.

- Was learning cursive really necessary?

- Lol has gone from meaning, "laugh out loud" to "I have nothing else to say".

- Answering the same letter three times or more in a row on a Scantron test is absolutely petrifying.

- My brother's Municipal League baseball team is named the Stepdads.Seeing as none of the guys on the team are actual stepdads, I inquired about the name. He explained, "Cuz we beat you, and you hate us." Classy, bro.

- Whenever someone says "I'm not book smart, but I'm street smart",all I hear is "I'm not real smart, but I'm imaginary smart".

- How many times is it appropriate to say "What?" before you just nod and smile because you still didn't hear what they said?

- I love the sense of camaraderie when an entire line of cars teams up to prevent a dick from cutting in at the front. Stay strong, brothers!

- Every time I have to spell a word over the phone using 'as in' examples, I will undoubtedly draw a blank and sound like a complete idiot. Today I had to spell my boss's last name to an attorney and said "Yes that's G as in...(10 second lapse)..ummm...Goonies"

- While driving yesterday I saw a banana peel in the road and instinctively swerved to avoid it...thanks Mario Kart.

- MapQuest really needs to start their directions on #5. Pretty sure I know how to get out of my neighborhood.

- Obituaries would be a lot more interesting if they told you how the person died.

- I find it hard to believe there are actually people who get in the shower first and THEN turn on the water.

-Shirts get dirty. Underwear gets dirty. Pants? Pants never get dirty,and you can wear them forever.

-I can't remember the last time I wasn't at least kind of tired.

- Bad decisions make good stories

-Whenever I'm Facebook stalking someone and I find out that their profile is public I feel like a kid on Christmas morning who just got the Red Ryder BB gun that I always wanted. 546 pictures? Don't mind if I do!

- Is it just me or do high school girls get sluttier & sluttier every year?

-Why is it that during an ice-breaker, when the whole room has to go around and say their name and where they are from, I get so incredibly nervous? Like I know my name, I know where I'm from, this shouldn't be a problem....

-You never know when it will strike, but there comes a moment at work when you've made up your mind that you just aren't doing anything productive for the rest of the day.

-Can we all just agree to ignore whatever comes after DVDs? I don't want to have to restart my collection.

-There's no worse feeling than that millisecond you're sure you are going to die after leaning your chair back a little too far.

-I'm always slightly terrified when I exit out of Word and it asks me if I want to save any changes to my ten page research paper that I swear I did not make any changes to.

- "Do not machine wash or tumble dry" means I will never wash this ever.

-I hate when I just miss a call by the last ring (Hello? Hello?Dammit!), but when I immediately call back, it rings nine times and goes to voicemail. What'd you do after I didn't answer? Drop the phone and run away?

-When I meet a new girl, I'm terrified of mentioning something she hasn't already told me but that I have learned from some light internet stalking.

-I like all of the music in my iTunes, except when it's on shuffle,then I like about one in every fifteen songs in my iTunes.

-Why is a school zone 20 mph? That seems like the optimal cruising speed for pedophiles...

- As a driver I hate pedestrians, and as a pedestrian I hate drivers,but no matter what the mode of transportation, I always hate cyclists.

-Sometimes I'll look down at my watch 3 consecutive times and still not know what time it is.

-I keep some people's phone numbers in my phone just so I know not to answer when they call.

-Even under ideal conditions people have trouble locating their car keys in a pocket, hitting the G-spot, and Pinning the Tail on the Donkey - but I’d bet my ass everyone can find and push the Snooze button from 3 feet away, in about 1.7 seconds, eyes closed, first time every time...

-My 4-year old son asked me in the car the other day "Dad what would happen if you ran over a ninja?" How the hell do I respond to that?

-It really pisses me off when I want to read a story on CNN.com and the link takes me to a video instead of text. -I think the freezer deserves a light as well.

-The other night I ordered takeout, and when I looked in the bag, saw they had included four sets of plastic silverware. In other words,someone at the restaurant packed my order, took a second to think about it, and then estimated that there must be at least four people eating to require such a large amount of food. Too bad I was eating by myself. There's nothing like being made to feel like a fat bastard before dinner.

-I think all of the water/ice-in-door dispensers should be larger. Since my whole glass doesn't fit under there, I would say I wind up water my kitchen floor at least as often as I get a nearly-full glass of water.