Words That Heal

If my doctor told me I had only six minutes to live, I wouldn't brood. I'd type a little faster.
~Isaac Asimov

I was reading this article today about how writing through a serious illness can be cathartic.  I wholeheartedly agree.

I may have started this blog under the guise of keeping friends and family informed about my progress through surgery and treatment but it evolved into so much more. 

I started with just a few posts that were more factual than feeling.  Soon enough I was talking about the confusion, pain, fear, loneliness, anxiety… all the things that I couldn’t say out loud when asked “how are you doing?”  Those who asked such a question received an ever cheery smile and the upbeat “I’m doing good…”, “Feeling much better thanks…”, or “Everything is going really well…”

Truth is sometimes it wasn’t all hunky-dory.  Truth is having cancer is never ok.

I feel like my writing through my cancer journey was honest even if it wasn’t always light hearted.  I also think that writing about it was the cheapest form of therapy I could have found {with the exception of Gilda’s Club of course!}.  It helped me organize my thoughts and feelings and really reflect… and now that I’m on the other side it helps me to remember things completely lost to cancer brain.

I’ve realized that even though I started this blog for my friends and family, it isn’t about who reads it, its about the life I’m able to live because I wrote it.

Fill your paper with the breathings of your heart.
~William Wordsworth

Live your life from your heart. Share from your heart. And your story will touch and heal people's souls. 
~Melody Beattie

I’ve Got A Feelin

“June 12th, 2009 – …My doctor was nearly certain - in fact said he would be "very surprised"- if my full pathology came back as anything but benign. 

We were both a little shocked when I went in to have my stitches out a week ago Friday and found that "Bob" had been sent to the Mayo Clinic for a second look. He said he would call me as soon as the reports from Mayo came back...

So that is basically how exactly 2 months after my 30th birthday, I got the phone call telling me I have cancer”

Today marks 2 years since I heard the words “You have cancer…” over that phone line.  It’s a day I will never forget...  A day that changed my life forever.

It seems like a lifetime ago but at the same time I know I’m not at that magical 5 years = cancer free mark yet.  It is probably why I have been dragging my feet to find a new endocrinologist and have my testing done.  I know I need to do that.  I know.  But I’m scared that there will be news I don’t want to hear.  That and Endos are notoriously prima donna like so meeting yet another one isn’t exactly high on my list.  I will make that appointment. I promise.

So how am I celebrating 2 years of survivorship?  I don’t know yet.  I’m thinking of sleeping in, reading a good book, watching a new movie, and heading down to get a Peanut Butter Dream to stick 2 tiny little birthday candles in. 

I’ll light those 2 little candles.  And while blowing them out I will make a little wish for all the dreams I’m holding in my heart.

Because as I said one year ago today…

“Today is a day to celebrate every moment, to appreciate the little things, to stop and smell the roses, to live life to the fullest, to shout it from the rooftops! 

I am here, I am healthy, I am loved, and I have a very long life in front of me.

For today, I am pushing all of that away and am remembering that today is worth celebrating because life is worth celebrating!  Life in all its ups and downs is simply a gift every single day. 

Today Every day is my most precious gift”

Mind Over Mass?

I was reading an article on CNN.com today about a guy who “visualized” his bladder cancer away.

Uhm…

Ok I’m not one to knock a miracle or anything… and I think we have all heard a story or two of someone who was seriously ill and then suddenly wasn’t… but I always cringe when I see articles like this. Articles that basically say you don’t need to get the standard treatments, you can just sweat/exercise/eat/think yourself to a cure!

While I can’t argue that miracles DO happen, I think I can safely say that they don’t happen to everyone. And if you forgo all the amazing things that modern medicine can offer, you may just get the short end of the stick.  In my humble opinion, you need to take ownership of your diagnosis and then do whatever it takes to kick it’s little booty!

At the same time I have read many studies about the impact that attitude has on outcomes in patients.  Basically they all say if you think you are sick and dying, you may want to be a little more careful of what you wish for…

Now, I’m not going to say it’s easy to stay positive through months [and sometimes years] of treatment.  I know I had my moments… or at least I think I did… where everything was completely miserable, horrible, the worst ever.. [hmmm now I think I’ll have to look back at those blog entries to check]  And sister, if it makes you feel like you have some control over the situation by eating only raw, crunchy, rabbity food… by all means go right ahead!  We could all use those extra vitamins and minerals to boost our immune systems!  And if you feel like meditation and visualization helps you keep things in a positive light, then Namaste.

But please, please, please people… talk with your doctors about all your options! You may be surprised to find how many of them will encourage and support your complimentary medicine wishes and will even incorporate them in your treatment plans.

In the end it’s all about owning your body, mind and spirit instead of letting the diagnosis take that role.

Longing…

A friend of mine recently went on vacation to one of my most favorite places in the world. Pigeon Forge/Gatlinburg, TN. If you have been there, you know what a tourist trap this place can, especially during the summer months. Its home to DollyWood, Dixie Stampede, the Ripley’s attractions, country themed wedding chapels ‘ala Vegas, gem mining, and mini golf among other things. But it is also at the foot [or middle depending on which city] of the Smokey Mountains National Park which is so incredibly beautiful. I love all of it mixed together. Yes, even the funnel cakes. I even convinced KT & Brian to go there on their honeymoon and played travel agent! [not sure they recommend me as travel agent… long story!]

I love the mountain cabin rentals that include awesome views, fireplaces, hot tubs, pool tables… and i love hiking through the park to see rapids and waterfalls and old mountain settlements not to mention the random deer & bears! Its the first place I think of going whenever I need peace and rejuvenation. Hence why I'm longing to go there now [and the teensiest bit envious of my friend who just returned]. Sigh… It will have to wait until next year so until then I have to settle for old vacation pics!

Enjoy… you just may want to plan a trip for yourself ;o)

Too Much, Too Soon

I decided to make my first foray back into the public today [aside from Dr’s offices that is] by going to breakfast with my family and then grabbing some groceries.  According to my hospital issued isolation precautions this was ok but just in case we made some extra precautionary plans to avoid pregnant people and kids for lengths of time.

From the moment I woke up I knew it was going to be a tough day.  You see, I haven’t slept more than a couple hours at a time for days now but last night I fell asleep around 12:30am and then slept straight through my alarm an extra 45mins.  When I realized how late it was I had 15mins to get ready before my parents picked me up! [note: still not able to drive]  I was feeling the exhaustion down to the very center of my bones.

We went to breakfast and afterward, mom asked if I needed anything from the store.  Of course I did because the only food I had in the house was LID friendly [nightmare] or was the normal random odds and ends that don’t make up an actual meal.  So I told her yes even though all I wanted to do was curl up in a ball in bed.  We grabbed things at the store and my mom said I was looking pale so she knew it was time for us to go.  We had to make one more stop for my kitties [food] but then they took me home.

Sounds like a crazy big exciting day huh?  Apparently it was for me.  The exhaustion is ridiculous and there is simply no way to explain it to its depth or breadth.  My entire body hurts.  My neck is throbbing and I can’t lay down because of the interminable reflux.  I could go on and on complaining of various symptoms but I won’t.  I will just say at the moment I'm completely miserable and I hope that I can sleep again tonight.

Worst part of today?  I didn’t even enjoy my breakfast because I can no longer taste anything.  Another one of those “no side effects” side effects from the RAI.

Junkie

Hi, my name is Christina and I'm addicted to internet games.

So I have to admit that over the last week I've become somewhat of an internet game junkie. Like the ones on Yahoo! Games or available through Facebook. I guess after weeks of watching the same TV shows over and over again I had to find another outlet for my hardly functioning brain. It started out innocently enough with a slight addiction to Sorority Life on FB and when that started to get annoying I started up a restaurant venture in Cafe World and built an amusement park in Roller Coaster Kingdom. When I felt like my brain was functioning a little I did the daily crosswords on Yahoo! It beats watching the same episode of CSI for the tenth time I guess. It surely passes the time when I can’t sleep.

Sigh…

Today was my 1month post-surgical check.  He liked the way my scar was looking [much better than the 1st surgery] but said it will probably get pinker before it starts to fade.  AOK with me - ‘tis turtleneck and sweater season after all!  I told him about my experience with the RAI and he seems to be the only Dr that wasn’t surprised to hear of the “no side effects” side effects.  I am scheduled for a whole body scan tomorrow morning and he said I can call him next week for the results.  He also said I need to come back in another 6 weeks for a follow-up and another neck ultrasound and that we will check my labs again to make sure my meds are the correct dose.  He also said I don’t have to keep taking my calcium supplements much longer.  Right now I'm on 1 Tums twice a day.  If you remember, I started out at 2 Tums 4 times a day after surgery because of injury to my parathyroids.

So then we turned to the topic of when I can go back to work.  I said I was thinking that after 2 weeks of being back on my thyroid meds, I should be good to go.  Dr seemed a bit hesitant and said I would still be exhausted and coming out of hypo hell at that point because my TSH is extremely high.  I bargained with him and said I could work from home when I was feeling the exhaustion and he agreed to write me the note!  So I'm set to return on October 19th as I originally planned! 

Here comes the sigh…SIGH…

If you have seen me over the last year, you know that last year I worked very hard to lose 25-30lbs over the summer.  I was feeling better than I had in a few years [aside from unexplained thyroid symptoms].  Over the holidays and such I had gained back 5-10lbs but still felt really good.

Before	After

Well since the start of this whole thyroid cancer mess in May, I have successfully gained back all but 5-10 of those hard lost pounds. What really sucks is in just one week before my RAI, I gained 10lbs!!!  Seriously?!  At that point I was eating less than 1,000 calories a day. Basically my TSH went so high that my metabolism became non-existent and all of my body functions slowed to a ridiculous point.  There were days when I didn’t even feel hungry because what I ate the day before was still there.  Yes, some of it is water retention and swelling from surgery, hypo hell, and RAI and when my TSH gets back to "normal” my metabolism will return to “normal.”  But you can bet your bippy the weight isn’t just going to magically fall off. [Another thing to liken to pregnancy?] I know that I can lose it again but I also know it is going to be a long, slow climb back to “normal.”  Thank God I haven’t sold/donated any of my bigger clothes yet!

NOT Fun

I’ve had many calls/emails/FB/posts/texts asking me how I’m feeling now that I “glow in the dark.”  In one word: SICK.  Looks like my first 24-48hrs of this will be all about trying NOT to throw up.  If I do, I have to call the hospital immediately.

At first I felt ok, but after a couple hours the nausea started to set in.  Now it won’t go away.  I’m supposed to be sucking on lemon drops every 15mins but those make me feel sicker so I'm popping one as often as I feel I can.  I’m supposed to swish with baking soda every 30mins but that is dis-gust-ing so I'm doing that as often as I feel I can.  I’m supposed to be drinking [and going] twice as much as normal, but I can hardly stand to eat so I'm drinking as much as I feel I can.  My salivary glands are very sore and swollen so I'm massaging and putting a heating pad on – that is one thing I can actually stand to do at any time [yay for small victories!].

Other cancer patients and their families are advised “If it sounds good to the patient when they are feeling nauseated, give it to them because that is probably the one thing that will stay down.”  NOT me!  I wanted pizza last night at 10pm that was a big fat NO. [Mom said so!]  I’m resigned to oatmeal and rice cakes and chocolate zucchini bread – the same things I've been eating since September 18th – until Saturday 1pm. 

I do have to toot my own horn a bit and say I'm very proud of myself for NOT cheating on the LID, not even a little.  Granted I started a little earlier than expected because of the scheduling mix up and I was not total LID the weekend of my cousin’s wedding [Sept 19-20] but since then…

Oatmeal w/ brown sugar and cinnamon	bow tie pasta w/ homemade pomodoro sauce [v.good]
Rice cakes w/ Peanut butter and bananas	Flowering Teapot

On a more positive note, flowers were delivered to my “isolation station” today!  No pics yet but ich war sehr suprised und glücklich!  They were from “Gpa 09” [yes he did sign the card that way!]. My grandpa is about the sweetest thing ever – Thank You!

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!

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!

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!

Reboot

So reading over my posts it seems i've been putting out a negative tone lately. I guess its easy to get lost in those moments of fear, anxiety, sadness. Sometimes they take over and make projecting to a better time difficult. I don't want anyone to worry that i'm sinking into a bad place because I feel far from it. Its just the myriad of emotions that happen and i'm letting them happen. If I try to keep everything inside it would be disaster. I wish I just had some time off to go somewhere remote, quiet, and beautiful so I could renew my spirit... I also wish I had the money to do that! At the moment i'm saving both PTO and cash for my next leave because both will be in short supply when that comes around. Anyone have a free cottage I can escape to?

Post Surgery Update (may be TMI for some people)

So surgery was Tuesday morning at 7:30am..had to be at the hospital at the lovely hour of 5:30am... But they have valet (no i didn't drive) and I didn't have to do my hair or pick out an outfit so it really wasn't all that bad. Plus I got to go back to sleep! ;o)

Anywho, I apaprently shared too much during my pre-encounter call (nurse calls, gets your history and current stats before surgery) because everyone (nurses, doctors, interns) thought that it was hilarous that my nodule/mass thingy had the lovely nickname of "Bob." A bit of a backstory there...my lovely brother-in-law said i had a baby in my neck and my lovely sister decided to name it Bob... well i told the pre-encounter nurse that i was looking forward to "Bob" coming out! Hey, she caught me on my last day of work (Friday no less) and in the middle of an intensive audit prep/clinical documentation training session! It was a moment of slap-happy weakness.

So back to the details... I was prepped for surgery which included getting into my new, cool hospital style dress/shirt and an IV in my hand and talked with my surgeon, anesthesiologist, senior resident and the med student assigned to my case. Just after 7:30am i was rolled into the surgical suite, had a mask put on my face and some "calming meds" put into my IV and thats the last I remember until about 11:30am.

I woke up in the recovery room freezing to death (I was shaking) with a nurse that wanted me to tell her the number of my pain...yeah my throat felt like it was on fire except for the ice pack on my neck and I just wanted to go back to sleep! I got some morphine shots and warm blankets and then I remember my mom coming in to help wake me up. Then i was wheeled past my dad and A.Pam and maybe another person or two (?) and into my lovely private room overlooking the new children's hospital and downtown GR (I had 2 windows- Thanks A.Pat!). The next few hours are a bit blurry - I had several visitors including mom, dad, A.Pam, Pastor Rick, Gpa, A.Pat, Mayme, KT, Brian, doctors, interns, nurses, techs... At this point they were giving me dilaudid and ice packs so I was just out for the count. I had a few ice chips, and by the time evening rolled around I was upgraded to Jello and chicken broth. I was also unhooking myself of the leg circulation machine and BP machine to get up to the restroom so I could rid myself of the betadine beard I had aquired.

I had also learned that once they got in there to look around, they found my nodule/mass thingy had ruptured at some point which made it stick to other essential items in the neck. (fantastic) They had to scrape it from the other structures including my laryngeal nerve (the one that controls the voice) so basically things were very inflamed and angry in there. Good news is that the frozen section biopsy looked good and they only ended up doing a partial thyroidectomy.

The next morning I was visited by the med student at 5am - she asked me a lot of really dumb questions for that time in the morning. Then the resident visited at about 6:30am to rip off the bandage over my incision and she wrote orders that I could try real food (YAY!). I was promptly given a menu that I could order my "room service" from LOL - totally not lying on that one! I ordered a fruit and yogurt parfait which was very yummy and was working on some apple juice and cream of wheat when my surgeon came in and wrote the order that I could go home! (another YAY!) So i said goodbye to my absolutely fabulous nurses and was wheeled to the parking structure while my mom got the car.

While waiting there in all my dirty hair/no makeup/bandaged glory, I see some of the big-wigs from the hospital pass me and hope they don't recognize me... then the president of the 2 hospitals I manage for came strolling by and said hello. I think he only had a vauge recognition... at least i hope!?

So home I was and feeling pretty good overall. I made it up the 2 flights of stairs into my apartment, was continuing on some solid foods, was taking my vicodin and putting the ice packs on my incision... was still a bit in and out of things and fell asleep while my mom was trying to talk to me about a movie we were watching (sorry!). Grandpa and dad came over for dinner and I was feeling pretty good so I took my pain meds, put an ice pack on my neck and decided to turn in for the night. Well about 3:30 am I woke up and had that horrible feeling that I was going to be sick. I ran to the bathroom and was immediately and violently sick... this was my worst nightmare come to life! My mom came running from the guest room saying things like "oh no!" and "take a deep breath!" I felt like i was going to die as I tried to hold my head on my neck in a stationary position so I would not rip out my stitches. Seriously - I have a gash across the front of my neck and now i'm so sick that I feel like my head is going to detach from my body - it was horrible!! And then it was over and I felt remarkably better (well in loads of pain but not like i was going to be sick again) and I crawled back into bed where Moses Jean put her paw on my arm and I drifted back to sleep... only to wake up about a half hour later to repeat the whole thing! This continued every 15-30mins or so until my mom called my dad to bring some Phenergan from their house... when he arrived at oh maybe 7:30ish I was in a down time but waited to take the meds until i was sick again so it would stay down and work for a bit. I took the meds and drifted to sleep hoping to not wake up for quite a while but I woke up again about a half hour later, sick once again. By this time my mom was calling her work to say she wouldn't be in and calling the surgeon's office and was (I think - i was a bit delerious) making plans to get me in the car to ER. Well thankfully after that last bout I drifted to sleep and stayed that way until about 2pm...

Of course when i woke up I felt like heck and was back on liquids and jello once again. I gradually took some tea and toast and then actually had real food for dinner... but avoided the vicodin completely because that's what was deemed the cause by my surgeon. Vicodin is EVIL!! So I went to bed Thursday night with some dread but ended up sleeping fairly well with no repeat of the previous night's nightmare. (YAY!)

Today I was feeling better but still a bit weak... just a bit bored because I only got 1 phone call of the millions promised (my mom had enlisted a bunch of people to check up..apparently they aren't good babysitters!). I did get caught up on my Gilmore Girls episodes and a couple movies and read an entire book (chick lit but still over 500 pages) and now i'm on the internet for the first time in a couple days :) Aren't you so lucky?

I really appreciate all the thoughts and prayers...keep em coming as the surgeon says it will be months before i'm able to raise my voice or attempt to sing even one note. My neck is still swollen and I have a nasty looking incision (ala Sweeny Todd) but if you can stand it, visitors are welcome. Otherwise keep sending your love via internet so i have something to do for the next week of recovery! :)