10.29.2009

Someone Up There Loves Me

Today was completely amazing – no seriously, miracles happened!  I went in to my PCP at 10:30a which I think was more of a “stop bugging us!” appointment because of all the calls my mom and I have made about getting an endocrinology appointment.  My PCP wasn’t annoyed by us yet [yes I did ask him and he said we would have to put more effort into it] but I think we annoyed the nurses.  So anyway I'm there and we are talking about the specialist issue and options and then he says “Ok who do you want to see?”  So I think a minute and say “Let’s go with Dr. K.”  So he calls Dr. K’s office and they say they have an appointment TODAY at 4p do I want it? Do I want it?! YES! Then he calls up radiology and asks for a CD to made of my exams and they say they can have that ready by 3p in time for my appointment! Seriously, that never happens!  So I go back to work for a bit and then head to the hospital to pick up the CD and then to Dr. K’s for my appointment.

I met my aunt at Dr.K’s office. [note: never go to cancer appointments alone]  I was nervous because endos are a bit of a nutty bunch and I had no idea what I was getting into.  Everyone at the office was really nice so that was a good start and when Dr. K came in the room he seemed very open and easy to talk to.  He asked me a million questions about the course of my treatment up until now and expressed surprise at some of it.  It was apparent he thought that things had been handled a bit differently than the norm.  I did receive appropriate treatment with a full thyroidectomy and RAI, he was just surprised they waited so long to take the other half of my thyroid and that they weren’t going to do a post-RAI scan. [go me for fighting for my scan!]  Then we asked about follow-up and he gave us a very clear picture of appointments every 2-3 months with bloodwork to watch my tumor markers [ie: Thyroglobulin or Tg levels].  About the concern over the uptake in my lung, he said it would be very unlikely to be mets but that following the Tg closely would confirm this.  He said it was more likely that I had a bit of pleurisy from being so hypo and that is what caused the uptake.  So I have 2 future appointments scheduled with Dr. K’s team and feel very comfortable with the plan now.  I also feel like God was in the mix, making all the right pieces fall into place today.

10.28.2009

Just a lil bit Crazy

I think my Dr must think I'm neurotic.  Or maybe he just thinks my mom is neurotic?  I guess that would be ok.  Anyway, I think between the 2 of us we have called his office possibly 50 times in the last week. 

I still have no specialist who will see me.  My mom is now stuck on me being referred to a Dr. K. [note: we started with Dr. N moved on to Dr. C and now… Dr.K] She even called his office to make sure he takes thyca patients with possible lung mets. He has an opening on Nov 17 so all we need to do is get my papers over to his office and I'm in!  In the meantime I feel like I'm breathing through mud – yay fun – so I’m visiting my PCP tomorrow.

On the good news front: there was sunshine today for the first time in weeks and I actually got out of work in time to see it for about 20mins!  Also, I think I can finally say that I didn’t go into early menopause… It had been 3 months so I was starting to wonder!

10.27.2009

Tastebuds Where Art Thou?

Dear Tastebuds,

Where have you gone?  I miss you dearly and implore you to return to your right and proper place on my tongue. I deeply apologize for irradiating you nearly one month ago but I promise your environment is no longer equal to that of a nuclear reactor. 

Don’t you miss the sweet and tart flavor of Honeycrisp apples fresh from the orchard?  The cheesy, gooey goodness of Taco Bell nachos bell grande?  What about the satisfying sweetness of double chocolate Ghirardelli brownies?  And how can you not miss the smooth deliciousness of grandpa’s hot chocolate recipe?

How can I make it through Halloween not tasting even a bit of Take 5 bars, Reese’s peanut butter cups, apple cider donuts and Snickers?!

Please, oh please come back to me!

Waiting in anticipation…

CK

10.26.2009

Le Sigh…

After a full week back at work I should have spent the entire weekend doing nothing but sleeping but I allowed myself to get dragged into a shopping trip across state with church because my mom said it would be "good for me to get out.”  Yeah, maybe that would be a good idea in a few weeks when my strength is back and my TSH is back in the “normal” range!  I went but knew it was probably not a good idea just about as soon as I woke up on Saturday morning.  Well… maybe I figured it out Friday night when I was trying to check email and fell asleep while literally sitting at the computer.  Anyway, I tried to make the best of the trip without being too much of a downer for everyone else but by the time we got home that night I could hardly climb the 2 flights of stairs to my apartment because I was feeling so weak.  The next morning I got up and started getting ready for church/Noah & Ethan’s dedication and Grandma’s birthday lunch and I could hardly move.  Needless to say I didn’t make it out of the house but spent the entire day with multiple layers of clothes and blankets on trying to get warm. 

No I don’t have H1N1 – I don’t have a fever or cough – I just have cancer that my body is still trying to kill off.  My RAI treatment works for the next 6mos or so killing off the cancer cells and I'm also slightly immunosuppressed from the treatment killing off some WBC’s… also my thyroid stimulating hormones [TSH] are out of whack… I'm going to be a little not like myself for a while yet.  Yes, i’m in the high risk group for H1N1 and the regular flu.  No, I haven’t yet been able to get immunized against either strain.  I’m working on it, there just aren’t vaccines available!

Today and tomorrow I have easy work days because I'm sitting through orientation for the 3rd time in 5yrs with the same company. [note: transfers within the system are not always seamless/easy]  But this also means that Wed-Fri will be crazy busy playing catch up plus month end account wrap up.  UGH.

Still no word on getting an appointment with Dr.C.  I’m sure the fabuloso referral lady at my PCP’s office was working on it all day and I might hear something [anything?] tomorrow… let’s hope right?!

10.23.2009

Onco? No.

Just as I suspected, the oncologist wouldn’t accept my case because they don’t treat thyca patients. Ok so now what?  The next step is a referral to an endocrinologist. 

Ok, the oncologist suggested Dr. N in the area… hmmm name sounds familiar… why…why…why?  Oh yeah he’s the one that told my aunt that 60% of his patients never feel better, didn’t listen to what she had to say, and acted like she was wasting his time.  NO THANK YOU!  Sorry but I don’t need to waste my time on a Dr like that.  Yes I know that each patient may have a different experience but still, if he’s telling his patients he can’t help them most of the time I don’t think I want to visit him!  So mom calls back to say we don’t want to see him and we would like a referral to Dr. C whom we have heard is wonderful but only works part time because she has small kiddos at home. [read: average 6mo waiting period to get in] 

If we can’t get in soon we may have to revisit seeing Dr. N… or going with the suggestion from some fellow thycans but that would mean driving to Detroit for appointments.  Let’s just see what happens shall we?

Now a few words about H1N1 [note: it is NOT swine flu as originally thought, stop calling it that]… H1N1 seems to be all the rage around here as they are reporting 2 deaths in the area and people are standing in line for hours to try to get vaccinated.  As a person considered to be at “high risk” because of the recent cancer treatment and immunocompromised state, I have to rethink things a bit.  Do I go to the mall, to a movie, to restaurants, to church…? Do I go but wear a mask everywhere I go?  The vaccine isn’t available, or if it is they have the mist which I can’t get because of having cancer.  I guess I have to chance it.

Some statistics and info from the CDC on H1N1:

  • 24% of people hospitalized for H1N1 are 24-49yrs
  • 32% of H1N1 related deaths are in people 24-49yrs
  • Signs & Symptoms: fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. Some people may have vomiting and diarrhea

10.22.2009

Just One More Day

Just One.  Then I can sleep in… oh wait, no I can’t… I’m signed up for a group trip to Birch Run/Frankenmuth.  Why did my mom think that would be a good idea again?

So this week has been ridiculous.  Its only expected that after weeks off, your first week back to work is going to be crazy, right?  In addition to the normal catch up stuff though, I'm trying to navigate through the paperwork/blood test/TB test/flu shot/drug test maze that comes with transitioning to a different entity within our health system as well as getting used to my new director and her expectations.  There are still questions surrounding if I can even get the mandatory flu shot – screw it - just give it to me because I'll get the flu one way or another at this point!  Oh and after I got my TB test today I notice that people with head and neck cancer are in a moderate risk category when they get certain reactions. Fabulous. 

I have told myself, my employees, my bosses, my doctors… that I would work from home and/or work shorter days if I was feeling exhausted.  Yeah that hasn’t happened… oh I'm exhausted all right but it seems that anytime I hit the point where I think I really have to leave now because my brain is shutting down and I'm not sure I can make the 45min drive home some crisis or another happens and I need to give a bazillion answers to people ASAP.  By the way, everything in a hospital needs to be answered or done ASAP these days.  Tonight I'm feeling so tired I'm not sure I will be getting up to make anything for dinner.  I don’t need to eat right?  And I can’t taste anything still so…

No word on the 2nd opinion yet even though I called to check on it yesterday.  I have a feeling the oncologist won’t accept my case because they generally don’t treat thyroid cancer patients so they might not know what to do with me.  That’s ok because I have gotten some wonderful suggestions for specialists from fellow Thyca friends. Just want the word on if the Onco’s are taking my case or not and then we can keep moving on…

10.20.2009

Celebrate Life

By Sister Sue Tracy, OP a 4-time cancer survivor whom I met at my Bluebird Cancer Retreat [can also be found in Chicken Soup for the Surviving Soul]

Count your blessings, not your worries…

Express your feelings honestly…

Learn to laugh and laugh to learn…

Endure what is necessary…

Be open and flexible… go with the flow…

Remain in charge; network with family/doctors…

Accept and face your own mortality…

Treasure each day and each experience…

Exercise body, mind and spirit as able.

 

Live remembering that life is a mystery to be lived

  and not a problem to be solved…

Invest in your inner resources: courage, effort,

  determination, faith, hope and love…

Find your future in your now…

Emerge as a winner – not a victim or a mere

  survivor – but truly a thriver!

10.19.2009

Back At It

Not much to update yet but there were a few things to be noted about today…

One. My PCP wants me to see an Oncologist now so I'm waiting to hear back on my appointment date/time.

Two. Working a full 8hr day my first day back was probably a little too much. I came home and sat down to decide on dinner and woke up 2hrs later… oh and dinner ended up being mashed potatoes because I'm too tired to make anything else.

Three. Not being able to taste anything is NOT FUN.  I have learned that my favorite TB Nachos are dis.gust.ing when you can’t taste the nacho cheese. That caesar dressing without taste reminds me of mayonnaise which I despise. And donut holes taste like nothing while going down but have the aftertaste of play-doh.

Four. Flu shots at my work are mandatory if you value your job, yet I have to get physician permission before they will let me get my shot. Ummm… meanwhile everyone and their brother is sick and I have a bum lung.

Five. My new phone arrives tomorrow and I can’t wait!

Six. I am getting increasingly annoyed at the moment that the stupid baseball game [angels vs yankees] is pre-empting House, MD which now will not record properly with my DVR because the times will be off.  Somebody score already!

Seven. I could go back to sleep right now even though I woke up only 1.5hrs ago.  Its going to be a looong week.

10.17.2009

Micrometastasis? Maybe.

micrometastasis (n.): the spread of cancer cells from the primary tumor to distant sites to form microscopic secondary tumors.

My post-RAI WBS turned up activity in my “residual thyroid tissue and/or local lymph nodes”. (great specificity nuc med) The residual thyroid tissue is expected to show up because your thyroid is literally attached to most of the structures in your neck (most notably your windpipe) so they can’t physically get EVERY cell without damaging other, more important organs. The part about them not knowing if it was also showing uptake in local lymph nodes makes me entirely not confident in the nuc med physicians at my hospital. Well that and the fact that they didn’t think I needed a post-RAI WBS when it is ALWAYS done everywhere else… but I digress…

The WBS also showed “diffuse uptake in the left lung posteriorly” in a pattern “not consistent with focal metastatic disease.” What this means is there was RAI uptake in my lung but it didn’t show focal tumors (macrometastasis). If you remember, radioactive iodine is ONLY taken up by thyroid cells in the body (cancerous or regular) and whatever they gave me that wasn’t taken up by my residual thyroid tissue was excreted in urine, sweat, and saliva. There is NO reason there should have been any uptake in the lung with the exceptions of the presence of thyroid cells in the lung tissue OR an infection/inflammatory process (like pneumonia or pleural effusion). The recommendation by nuc med was to get a chest x-ray for further characterization which I had done on Friday. My chest x-ray was CLEAR. Meaning I have no pneumonia or pleural effusion or any other inflammatory process.

So what does this mean? Without the presence of focal metastatic disease (cancerous nodules) there is the strong possibility that I have diffuse micrometastasis of my cancer throughout my left lung. It could also have been a fluke in the machine but that is the less likely scenario.

So ok, what does that mean? In patients without metastatic disease elsewhere (this is why the lymph node comment bothers me) long term survival rates are very high when lung mets are too small to see on x-ray and have only shown up on post-treatment WBS. 10-year rates are still near 100% with these diffuse micrometastases… but when the mets become micronodules (<1cm) survival rates drop to around 40% and when mets become macronodules (>1cm) rates drop to 15%. It not showing on the x-ray is common in patients my age and is actually a good thing. Also, the dose of RAI I had (200mCi) is exactly what would have been prescribed had we known about this prior to my treatment and the follow-up course should not change at this point. In 8-12 months I should have a follow-up scan and if uptake is present on that scan, I will need another 200mCi of RAI, repeat that cycle until no uptake is seen on the post scans. We should also be monitoring my thyroglobulin levels and if they are elevated that will indicate persistent disease.

That all being said, I think its time for a second look/opinion on my case. I plan on calling my PCP for a referral to a thyroidologist and the only ones in state are at U of M. Any metastasis in thyroid cancer tends to mean higher chances of recurrence and/or further spread so I think having a specialist review my case would be a good thing at this point and if they have a more aggressive treatment plan in mind I will probably transfer my care to them.

So lots to think about, pray about, and try not to worry about in the coming months!

10.16.2009

Before You Pink

3day08 013

I like pink as much as the next chick. Well, maybe I like it slightly more than the next chick… I have been fundraising for breast cancer awareness/research/treatment for years and I've amassed quite the collection of pink or pink themed items. Heck, even my dad has a shirt that says “Real Men Wear Pink!” [thank you, On The Border!]

It seems these days that everyone is jumping on the multi-million dollar marketing bandwagon that is the pink ribbon. People see the ribbon and automatically think that buying that product will mean helping the cause. Au contraire mon ami! The Think Before You Pink website has 5 easy guidelines to follow if you are thinking about purchasing that “Pink” item.

Or better yet – donate directly to the organization, cutting out the middle man, and making every cent of your dollar count! Here are my faves:

*On a cancer related note, just got a call from my Dr about my post ablation WBS and there was uptake in my left lung. He said it is probably nothing but I'm being sent down for x-rays now. Happy Friday!

10.15.2009

Some Down Time

Since this journey began over 5 months ago I don’t think I've ever asked the question “why me?” [If i have in a previous post, I blame the brain fog] I’m still not asking that question, but I am going to pull my cancer card [read: get out of jail free for just about anything card] and say I have a right to feel down about things. Sorry if this comes as a shock to those who have been so encouraging to me or who have said they are amazed by my positive outlook. I can only say that I am human… and hypothyroid… therefore, I am prone to the occasional mood swing now and again.

What brings this on now you ask? I really don’t have a good answer for that. I know that my life has basically been on pause since May and I barely register that we are only 2 weeks out from Halloween. Moreover, in the last 5 months I've been living and breathing Cancer World. Not Sassy Vibrant Young Carefree 30-Something World. I’ve felt weak, sick, diseased, isolated, alone… While the people around me have gotten pregnant, married, engaged, changed jobs, bought houses… basically moved forward in their lives.

I was told that getting cancer was just a speed bump in life. [which is probably true in the overall grand scheme of things] Right now it just feels more like I’ve come to a washout in the road and everyone else is on the other side.

Brrrrr…

Fall. Its usually my favorite season of the year but where the heck is it this year?! Winter was ridiculous with 2ft of snow followed by 10 inches of rain in the same week, spring was nonexistent, summer barely hit the 80’s and now fall… its currently a windy, cloudy, balmy 35F. Seriously?! The reason I like fall is because the temps are perfect [read: 60’s] and the trees are beautiful and we usually have more sun than clouds. They are teasing me with promises of 50’s maybe next week, maybe we will get some sun with that too? I’m not holding my breath because after all, I live in Michigan and snow is not unheard of in just about any month.

10.14.2009

Ever Wonder?

What goes through the mind of a newly diagnosed 20-30’s something cancer patient? Here’s your chance to get a peek into that crazy upside-down world. Discovery Health Channel is showing Crazy Sexy Cancer a documentary by Kris Carr. Kris started shooting her film after getting diagnosed with a rare and incurable stage IV cancer. Her journey to a place of acceptance and her outlook is amazing, but she also shows those more tender and vulnerable moments that we go through.

I highly recommend you check it out or DVR it for later. You can watch it tonight at 8pm or 10pm or Sunday at noon on Discovery Health.

10.13.2009

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)White Tailed Deer

GSM Ntl Park Gatlinburgrapids

10.12.2009

Cutting Through the Fog

After weeks of being very deep in Hypo Hell and having the most ridiculous brain fog [see also: chemo brain]… for a few hours today I found myself with lots going through my mind!

That may not seem like an exciting [or good] thing to most people, but literally I feel like my mind has been a barren wasteland for weeks. Day in and out I thought of nothing, could concentrate on nothing, could comprehend nothing. I had all this wonderful time on my hands to plan fundraisers for the 2010 3-Day for a Cure or plan trips to visit Lacey in CO or Eva in Germany or work on my scrapbooks or simply email/call/text friends but I literally could. not. think!

Today for about 3 hours I was able to cut through the fog enough to make lunch, worry about my WBS results [coming Thurs or Fri], respond to emails in my personal account, contact HR & my bosses about going back to work next Monday, looked up my dentist appointment time, make a grocery list, almost make plans for a movie with Slaglm [forgot to look up times! oops!], asked my dad if they ever sent Chad & Allison’s wedding card [this was 4 weeks ago & my dad laughed at my memory coming back], sent out an email reminder to those interested in joining the 3Day team… and then I literally passed out for 2.5 hours until my mom called and proceeded to ask me if I was ok because I sounded out of it.

10.11.2009

Love or a Wedding?

I’ve spent a good portion of today watching the show Bridezillas on WE. It amazes me how completely insane some of these women are! Why anyone puts up with them and their crazy antics is beyond me. They are horrible to everyone around them! At what point did it become all about treating the bride like a psychotic queen and not about celebrating the start of your married life with your best friend and soul mate? Or maybe the better question is what are these men thinking marrying these psychos?!

I think that you should want the marriage, the relationship, more than you want this ridiculously extravagant day. The weddings that are more about embarking on that journey are very apparent. You see pure joy coming from the couple that outshines any overpriced glitter scattered about the tables.

I don’t know, maybe my take on the whole thing is outdated and romanticized? Maybe its because I'm older [and dare I say wiser?] than these spoiled 20-somethings who have obviously never been told no? Or maybe I've been through so much in my life to date that these tantrums seem more petty?

10.10.2009

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.

10.09.2009

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.

10.08.2009

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

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!

10.07.2009

I’m Home!

A few random thoughts about isolation and coming home:

One. Cross Live In New York/Chicago/LA off the list of things to do. I could never make it living in a studio apartment which is definitely all I could afford in any of those cities. The longer I spent in isolation, the more I hated the fact that my chair was next to my bed which was next to my desk which was across from the dining table and kitchen.

Two. When spending all your time in a small space, little things start to amuse or annoy you. Like I was completely annoyed that every time I turned on the bathroom light, the bathroom fan also went on. Why did this make me mad? I have absolutely no idea. On the other hand, I was amused by the “Tree People” – guys that worked for a tree company and were staying at the same hotel. They parked right outside my room and their trucks multiplied during the week. Then voila! Yesterday a major front blew through and knocked out power lines and trees everywhere! Were they migrating in hopes the storm would bring damage? I may never know.

Three. If I have nothing to do but watch TV, I better have the full cable options because 5 ESPN stations are just not good enough for this chick. I spent most of my time sleeping through Oxygen and Discovery Channel series or desperately hoping that Showtime would show something other than football or boxing specials. Seriously, there are enough ESPN’s in the world and yet the premium channels feel the need to further expound on mindless sports. And before someone jumps down my throat for saying I am not fond of sports, let me elaborate. Nearly all professional sports players are grossly overpaid to play with a ball or puck yet some have the gall to complain about only getting $2.5mill a year and how that is unconscionable. Really? Same goes for the bankers who feel they are more entitled to the American public’s money than the ones breaking their backs working 3 jobs to feed their children.

Four. I missed my DVR. I just got one in May ‘09 and I don’t know how I ever lived without one before. I liken this to the need to have internet and a cell phone at all times. I lived very happily for at least 17years without even a computer let alone the internet and about 21years without ever having a cell phone. Losing either for a week now would be devastating.

Five. My sense of taste is now wonky. Everything I taste has a sweet tinge. Like eating pea soup for dinner but having an aftertaste of sweet that lasts until you eat something else. Because the sweetness is constant, I can’t stomach the thought of eating anything that is supposed to be sweet right now. The only time I don’t taste it is when eating and even then some things just don’t taste right. Brushing teeth does not help, nor does drinking water or tea. This is one of those side effects that patients tell you about but the Drs swear don’t exist.

Six. My sense of smell is now also wonky. I liken it to what pregnant women describe having – a super heightened sense of smell. I can smell rotting flowers before they start to wilt. I can smell the BO of people around me and it about makes me sick. I could smell the feathers in my comforter and could tell they need to be dry cleaned. All these things do not help when you are nauseated. Oh yeah but crazy smell and persistent nausea are also non-existent side effects.

Seven. There is no place like home.

10.06.2009

Small Change Of Plans

I am now getting a post-therapy whole body scan on Friday.

After thinking about it, researching things, and getting a second opinion from a top Dr in the country via email… I called my Dr and explained my position on wanting one. The therapy dose of iodine is much higher making the post scan much more sensitive to showing metastasis to lymph nodes, bones, etc.

My Dr said even if it did show metastasis, we have already treated it, it wouldn’t change the follow-up, and might make me worried about metastasis we have already treated. I told him I understood but I wanted to know exactly what I was facing so that if my 1yr scan came back clean, it would be even better news – or if something popped up on my 1yr scan that doesn’t show on this one, we will know it hasn’t been there long.

Well since the hard part is getting the isotope and I've already had that, he worked out a time for me to “go under the camera” and I'm feeling very good about advocating for my own healthcare.

Clicks Wanted

A few things you can do for FREE to support some causes:

Vote for Ethan Zohn in GQ’s Better Man contest. Ethan is a cancer survivor and advocate as well as an AIDS/HIV advocate. He also won Survivor: Africa [you know, as in the TV show] and he used his winnings to found Grassroots Soccer to fight HIV/AIDS. Final tally is TOMORROW! You can vote once per email address. [no they don’t spam you after you enter]

Vote for Crash’s Landing in the $100,000 Animal Shelter Challenge. Crash’s is currently 6th in the country [No 1 in MI] and the top 3 shelters will win prizes! Voting goes through December 20th for the top prizes. My Aunt is a volunteer here and I'm not sure how she doesn’t come home with a new kitty every night! [only one vote per computer, per day – no email needed!]

And one of my favorites: Click daily to support FREE MAMMOGRAMS! All you need to do is click on the big pink button. And since October is Breast Cancer Awareness Month, your clicks count DOUBLE! [after all, the best things come in pairs] They also have some pretty cool PINK merchandise. ;o)

10.05.2009

To Mom & Dad

I know I've said “thank you” countless times over the past months… It just never feels like enough.

How can I begin thank you for being there for me through everything?

I know at times all of this was just as hard for you to take in as it was for me. I know I have given you information overload with all my research and been frustrated when I couldn’t explain all I had read.

You were there to visit when others weren’t. There to go with me to support groups and Dr appointments, there to listen even I didn’t know what to say, there to listen to and calm my fears, there to remember the things I forgot.

You did my laundry, got my groceries, cleaned my house, dropped off my mail, took out the trash, cleaned up after the “kids”… called the doctors back, relayed information when I couldn’t, recognized when I was past my limits before I totally crashed, and risked radiation exposure to drive me to and from treatment.

You were with me when I laughed, cried, worried…

So “Thank You” mom and dad… I don’t think I will ever be able to adequately express how very much you both mean to me.

Mom & Dad

Isolation Station

STAYING IN is the new GOING OUTThis is my new slogan for the week… or really pretty much since surgery over a month ago… Staying In is the new Going Out. Yes, I have the t-shirt thank you very much.

Today I happen to be feeling much better for the first time since last Wednesday. Not feeling normal yet, but I hardly remember what normal feels like so I'm just happy to not be fighting nausea for 98% of the day! Yesterday I started back up on my thyroid meds and even though it will take about 2 weeks for my TSH to start dropping into a more acceptable range I'm so glad that I'm finally on the way there.

I’ve had some questions about where I'm staying during my isolation period so I'll tell you I'm in an extended stay type hotel with a mini kitchen area and such. No maid service to radiate, brought my own pillows & comforter & towels & food… trying to keep the kitties and the hotel staff safe from my radioactive waves. For those of you who find this DSCN0848radiation thing to be a little far fetched, I'll give you the snapshot of my homeland security DSCN0844card – the one that will get me out of interrogation at the airport when I set of their radiation detectors for the next months. I was told DSCN0836to have this card on me at all times as it gives details about my treatment and contact numbers for verification. Anywho, back to the isolation room… Here are some more shots for your enjoyment. DSCN0841

You can see I was was watching an ANTM marathon on my hotel TV which is DSCN0852sitting next to my own personal TV. Odd I know, but with no TLC, Lifetime, A&E, 5 Discovery Channels, my DVR… I decided I needed my DVD player which wouldn’t hook up to the ancient hotel TV. So my wonderful parents brought me a TV that would work! I’ve also had a couple flower deliveries since “moving in” that have helped brighten the days.

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So I guess that’s about all I have for today! For those curious what I ate as my first meal – it was the BK followed by dinner of grilled chicken and mashed potatoes from KFC. Since then I've had pizza, salsa from the Dungeon, toast with butter, Dutch cream curls, and ramen noodles. I know it sounds super nutritious but I've only been concerned with what will stay down. When I get back home is when I will actually start eating more normally in part because I will have my pantry, fridge, freezer, pots/pans, oven… Oh and I can’t wait until I can get my hands on some popcorn at the movies! I have missed that salty, buttery goodness…sigh… Oh and actually going out to see a movie would be nice too!

10.03.2009

Say Anything

I’m kind of at a loss as to what to say today.  Today is definitely better than yesterday but the overwhelming waves of nausea are still attacking whenever they feel like it and at times I'm concentrating so hard on not throwing up that I can’t do anything else.  My meditation mantra is “I will not throw up. I will not throw up. I will not throw up.” for hours on end.  Yesterday felt like an eternity but today its already noon – definitely an improvement.

At this point I'm still going hypo as both my Drs told me I can’t start my thyroid meds until Sunday morning so those symptoms are still horrible as well.  Most notably my entire body is in pain and I don’t think I've ever felt so weak in my life.  I may have to go hypo again for follow-up scans but I can handle it as long as I never have to do a treatment dose of RAI again at the same time.  Last night I was having trouble breathing from a combo of swelling in my neck from the RAI and my depressed respiratory rates from being hypo – couple that with the pain and not being able to take respiratory depressing pain meds… it was miserable.

Positive notes: my salivary glands are less swollen and sore today and I get to eat real food again starting at 1pm!!!!!  I have no idea what my first meal will be today, so far my craving has been a BK cheeseburger w/ ketchup only and fries with BBQ sauce.  I don’t even normally like BK but hey, my tummy wanted it in between nausea waves so maybe that will be it?

10.02.2009

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…

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Oatmeal w/ brown sugar and cinnamon

bow tie pasta w/ homemade pomodoro sauce [v.good]

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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 gl├╝cklich!  They were from “Gpa 09” [yes he did sign the card that way!]. My grandpa is about the sweetest thing ever – Thank You!

gpa nice

10.01.2009

I Am Radioactive!

the "hot" area Got to the hospital this morning about 6:45am and headed to the now all too familiar radiology department. I have been the teensiest tiniest bit radioactive since yesterday so I was whisked away to the Nuc Med area pretty much as soon as I walked in the doors. 

First up on the docket for today – the whole body scan!  Basically you lay on a long plank like thing that is only about 1.5-2ft wide for 45min-1hr trying not to move while the circle (camera) passes over your entire body. Then they take you to another room, aim a telescope like camera at your neck and tell you not to move for 5 minutes, then they point it at your leg and tell you the same thing.Scanner!  Its all a very strange process and I realize now it is harder to be still when you are told to do so!

After the scans were done, we were taken back into the whole body scan room to meet with the Nuc Med Dr.  My parents were with me and he was slightly confused as to who the patient was (kinda uncommon to get cancer so young huh?) which I found slightly amusing.  He basically gave us an overview of what RAI is and it’s purpose – I felt like I was in kindergarten because my knowledge on the subject is much higher than his explanation, I let him continue for my parents.  If anything he told them exactly what I've told them so that was good! (I will accept my doctorate now, thank you very much!) Then he said I would be give 200 mCi’s of RAI!  Ok so 200 mCi’s is pretty much the top dose they give anyone at one time so this slightly freaked me out.  Unfortunately my brain wasn’t working fast enough to get the questions out before he was gone so we headed home for a few hours to return at 1pm for my dose. (they don’t stock this on-site)  So we went to my place and I Precautionstook a nap, my parents ate some Wendy’s while I chowed on a plain baked potato, and we gathered up the last of my isolation “gear” before heading back to the hospital. 

When I returned I was once again taken right back into a little room where they brought in a lead lined capsule that contained my tiny container of 2 radioactive iodine capsules.  We then had a bit of confusion over me getting/not getting a post treatment scan so when I left I was waiting for a call back.  Well because of the confusion, my Dr called me and said they saw very little thyroid remnant left in my neck (good) and no indication of metastasis (v. good) so with the large treatment dose they expect that everything will be ablated (killed) and they didn’t see any suspicious areas that would make them need a second look with the more sensitive post treatment isolation bedscan.  I will be followed of course, and the scans can be repeated at any time if my tumor markers go up so overall this plan feels comfortable by all.

So now I'm in my isolation location for the next 7 days so I don’t damage my kitties with radiation!