Tax Season

Ahhhh...the dreaded tax season is approaching. While others involuntarily shiver, or say naughty words under their breath about tax season, I rejoice. I sing a song of hope, and do a dance of joy, and file our taxes by the end of January if I can. You see, for our family, this means we will be crawling out of a hole that medical bills have thrown us into for the past 2 years. A hole that likes to taunt and tease, and is just plain mean. So we crawl out, grab a shovel and fill the hole....until the bills start coming again. And again. And again......

Here's some factoring that I have done to give you an idea of how much we depend on our tax returns. Oh where to start? How about the miles I have driven this past year for medical appointments? That's a good place to start....try over 5000. 5000 miles ticking by in the car....tick tick tick (plus another 4997 ticks, but I will spare you). And I believe you get a $.485 deduction for each mile, which we all know is a crock since the cost of gas this past year has been horrendous. But, it's something.

Then there's the $4000 max out of pocket for my medical bills, which is awesome considering that each week that I go to Mayo costs over $1000, and that's if I only have treatment. No including any scans or blood work, or chatting with the doctors. Ok, let's chat about teeth, shall we? I have had quite a bit of work done to try and fix the damage done from chemo and bad genes. How much? How about close to $4000? Hmm. Can you see the money going down the drain? I can, I reach and reach, but there it twirls in a little tornado and SLURP! It's gone.

Drugs. I think we cough up over $100 a month for our every day drugs, then you throw in the good stuff from surgeries and such. I still have to get the final total on those, but I think last year we spent about $1500 on pills.

Now you figure in all the fun stuff, like contact lenses, the shower chair I got for after surgery, and the sitz bath. Things like that add up fast, my friend, which is why I save receipts.

Add in the cost of daycare, our deductibles and such, and I can't WAIT to get that refund check into our account!

So, now you can understand the anticipation I am feeling for tax season. Of course, all it will take will be a month before I hit my max out of pocket expense, and we will be back to crawling out of that hole. Oh well. It will be a nice month while it lasts.

Yup, those are my kids....

Christmas morning

The look on Claire's face when she saw all the presents....priceless

Where Did I Go?

It was a cry in the shower day yesterday. I think it was because of a book that I am reading, B.O.O.B.S. Don't get me wrong, it is a really good book, I can relate to the woman in it, and I think that is the culprit. It is a compilation of different woman's stories, so every time I read a new story, I am thrown back into the days of first being diagnosed. And here I thought those feeling were tucked away somewhere, but as it seems they are still pretty close to the surface. So why keep reading the book? Well, easy, maybe they can teach me something I haven't been taught yet. Maybe I can use some advise that I haven't been told. I don't know. Maybe I just like misery.

So I was thinking yesterday as I was reading the pathology reports of these woman and comparing them to mine, where did the old me go? What would I be doing right now if cancer hadn't blasted into our lives? What would I be thinking about all of the time instead of upcoming tests, treatments, doctor appointments, and recurrence? What will I do with all of my spare time when I no longer have to spend 5 hours each Tuesday going to and from Mayo?

I had a sense of panic in the shower as I took deep breaths to control my breathing and stop the crying. I have forgotten who I was! My mind raced as I thought and thought. Nothing. And I also know that I haven't been diligent in writing since Claire was born, so I can't go back and read that. I started my blog almost a year after being first diagnosed, so that won't help. I can look back at pictures, but all I think is "I wonder if I had cancer when that picture was taken?" Dang it! Not only has it invaded my present and future, but that sneaky little cancer crap crept into my past as well, and here's our conversation...

Setting the scene....Sue is looking through a photo album from three or four years ago....

"Ha ha ha! Look, Dion, there we are at the lodge with our friends a few years back. Boy, that was fun!"

Enter Cancer

"Hey Sue. Jeeze, that looks like you were having fun. I think I even may have been there with you, lurking around, challenging your life without you ever knowing it! Woo hoo! What a fun time THAT was!"

"Hey Cancer! I have given you a lot of my life and myself! You really should stay out of my past. Let me at least have that!"

"What? Are you kidding? What kind of effective disease would I be if I didn't screw with you in every aspect?"

"But that's all I have that hasn't been tainted with you!"

"That's what you thought....."

So there you have it. The closest memories I guess I have before my body failed me was that I felt safe. I felt optimistic. I felt strong. Oh sure, there are days where I feel all of these things, but more often than not, I don't. Last week at Mayo in the treatment room I asked a lady what her demon was, not really thinking about the words I was saying. But now that I have had time, demon.....you can't get more descriptive than that when it comes to cancer. I don't care if you have had skin cancer, breast cancer, throat cancer, non-Hodgkins, whatever, cancer is cancer is cancer. The scare is the same, the feelings are the same, the demon is the same, just in a different outfit. My cancer wears a bright pink pant suit, with sequins, a hot pink boa, and pink Doc Martin shoes. You cannot ignore my cancer, she won't let you.

I will continue to try and remember who I was a few years ago, knowing that won't change who I am now. But every once in a while I miss the old me, and I wouldn't mind running into her and sitting down and chatting.

Up Down Up Down Up Down

That is how my day has gone. I was pretty busy this morning with the kids, I had to open at work, which means that I had to be there by 6:00AM and then I spent an hour or so getting these holiday pails together for the kids. Then as the kids slowly made their way in, I got even more busy, which is good. Busy is good. Then the kids went to school, and things slowed down a little for me, and I honestly don't know what happened. I just became almost overwhelmed with emotions that were really not going in any particular direction. I was sitting in our van at the gas station, waiting for the tank to fill, odd thoughts going through my mind, and I felt a tingley sensation go through my body. I heard the click of the pump, the tank was full, but it was as though I was unable to move. I just sat there for probably 2-3 minutes, which doesn't seem like a long time, but it kind of is, until finally I figured I had better get my butt out of the van before they call the guys with the white coats and they drag me out. I went inside, paid for the gas, and went back to the van.

I don't know. One minute I am laughing, the next, I want to just curl up into a ball and cry. It's been almost 2 years since I was diagnosed, 2 years of treatments, and I am still having a hard time accepting the fact that things will never be the same for us again. I am still trying to get used to the idea that not every ache and pain is from cancer. I am still trying to grasp the fact that I am alive, while others are losing their battles. I am trying not to drown in a pink riddled sea of fear, but some days, I really need a life saver thrown to me. I try to remind myself that I am very lucky, that things could have been so much worse. So much more painful. So much more despairing.

I am looking forward to the day that instead of dwelling on what has happened, it becomes a faint memory, a blip in my life that made me slow down. A pink speed bump, if you will. Is that possible? I have no clue. I have been told that it is, but......

So with the holidays approaching, I find myself having way too much to do. We have Dion's family coming in starting tomorrow night. Some are staying with us, others are in a motel. We have lots of food to cook, lots of wine to drink, lots of smiles to share. I am hoping this weekend will be an "up".

Insert Foot Now

We've all done it, we've all had it done to us, and it never fails to make at least one person involved feel about as big as a booger. Foot In Mouth Disease....ah, the disease that inhibits all of us at some point, some worse than others, but none the less...

So I am in the teacher's lounge (how awesome is THAT? I get to hang out in the secretive teacher's lounge where we sit at tables munching on whatever snack someone brought in, talking abut the funny things kids do. Wait. What was all of the hype about way back when?) and there's four of us at a table. Well, I have to be honest here. I was standing next to the table that three other people were sitting at. So there's a student teacher who was here for a semester talking about soda and the effects it has on the body, based on the notion that if you put a penny (or nail or something) in a cup of diet Coke, it will dissolve. She was saying that she felt guilty drinking the soda in front of the kids because they kept telling her what was happening in her stomach, blah blah blah. At this point I told her that about 8 years ago, I used to drink 10-12 sodas a day, to which she says, "And see? You're not dying of cancer or anything!" To which everyone at the table looks at each other, then at me, and back at each other. She was not around almost 2 years ago when all the fun started, so she had no idea of my history. Well, she was right, I am not dying of cancer, but I could not resist. "No, I have survived cancer." Suddenly everyone was VERY interested in what was on their plate, and this poor poor girl, I felt kind of bad, but not really, just covered her eyes. I thought for a moment she was going to cry. She just kept mumbling "sorry" over and over. After repeatedly saying that it was ok, I finally just left the treasured teacher's lounge. I guess I gave her a memory to take with her. Insert Foot Now.

Then.

Now.

Wow, When I Couldn't Find the Words.....

I was looking through some blogs, and one titled Cancer, Baby caught my eye. Actually, it was the poem in it, that caught my eye. I have copied it, with the author's name, hopefully I am not being naughty in putting it in my blog, but I felt it hit the nail right on the head. I realised the other day, that I have been going through treatments for cancer for almost 2 years now. In fact, I looked at a picture of myself right after Nadia was born, and then looked at a more recent one, and I can see all of the aging I have gone through. Sigh.....here's the poem.


Try being sick for a year,
then having that year turn into two,
until the memory of your health is like an island
going out of sight behind you

and you sail on in twilight,
with the sound of waves.
It's not a dream. You pass
through waiting rooms and clinics

until the very sky seems pharmaceutical,
and the faces of the doctors are your stars
whose smile or frown
means to hurry and get well

or die.
And because illness feels like punishment,
an enormous effort to be good
comes out of you --
like the good behavior of a child

desperate to appease
the invisible parents of this world.
And when that fails,
there is an orb of anger

rising like the sun above
the mind afraid of death,
and then a lake of grief, staining everything below,
and then a holding action of neurotic vigilance

and then a recitation of the history
of second chances.
And the illusions keep on coming,
and fading out, and coming on again

while your skin turns yellow from the medicine,
your ankles swell like dough above your shoes,
and you stop wanting to make love
because there is no love in you,

only a desire to be done.
But you're not done.
Your bags are packed
and you are traveling.

-- Tony Hoagland, Sweet Ruin

What's wrong with this cat?!?

That Darn Candle

It keeps burning at both ends for me. I find myself some days in a whirlwind that doesn't stop until I lay down. But a positive in that is I no longer am on sleeping pills, so I guess that's good.

Tomorrow I am working my 12 hour day, and am actually kind of excited to be with the kids the day before Winter Break. That's right folks, it's WINTER Break, not Christmas Break, not Holiday Break, not Santa Clause Break, (ok I don't think the last one really is an option, but it's a fun thought, isn't it?). Anyway, I want to send the kids off in a good way so I have some planning to do.

Did I mention that I wrapped 107 presents this year? 107!! Come to find out that both Dion and I were buying gifts for the same people without knowing it, and well, you can figure out the rest. Ho ho ho.....just call us Santa(s). Speaking of Santa, we watched the movie Elf this past week, and while we both had doubts going into it, I think it will become a cult film of some sort. It was darn funny, starting with the Keebler Tree that caught on fire from baking cookies. Really, you should watch it. Dumb humor, but with a tender heart.

So yesterday was a Mayo treatment day, and I found myself close to tears a few times. Besides my port being touchy and not wanting to work, I met some new people. It's odd how I go every week and sometimes see the same people over and over. They treat well over 100 people each day, and yet I can see the same people each week. Anyway, I met a lady who went into the doctor for what she thought was acid reflux last Thursday. After tests, etc, by Friday she was diagnosed with stage 4 stomach cancer that had spread to her liver. Stage 4. It's so unfair. There's almost not even a chance to try and fight the disease. But, she was there for her first chemo, and I could tell just by talking to her that she had a wall up, unable to accept the hand that had been dealt to her. Who the hell would want to? But, as she said, her daughter is getting married in the spring and she plans on being here for it. I hope she is, for everyone's sake. When I asked her what her demon was (what kind of cancer) I meant it. Cancer is a demon. I don't know how else to put it.

So, the demon....I have talked before about my co-workers daughter's pancreatic cancer. Things are not looking too good right now. I pray that she makes it through the holidays, and that her family is given the strength they need. I just....I don't know, I tend to shake my head a lot and say it's not fair. It's not fair to watch someone watch their child die. It's not fair that she is leaving behind 2 kids. It's not fair that the family has to deal with idiots along with trying to deal with this tragedy. I really want to just grab some people, shake them, and tell them to get the hell out of their lives. This family is dealing with so much, they don't need any added stress. I feel so helpless, I don't know what to do for them. We all know that no matter what, the outcome will be the same. The question really should be, how do we (we, meaning anyone involved in her life)make this as painless as possible for Annette and her kids. Painless. That's a joke. There is so much pain swimming around in that ocean, that the biggest fish net could not contain it. Ugh. I find myself thinking about Annette and her family often, and I always end up holding my head in my hands, hoping for a miracle, but in my heart, knowing it won't happen. Losing my faith? No, but there comes a time when you have to be realistic, and as hard as that is, we are at that point. My body hurts with sorrow when I think about them. I just want to help, but I know there is nothing I can do at this point, and it sucks. I want to be able to take the look of pain off of my friend's face and lighten her heart. I want to hug the kids and tell them that it will be ok, but it won't. I want to give all that I can, but I don't know where to start. I am hoping to go over to Annette's home tomorrow, just to be there, but I don't know if I have anything to offer her. And I guarantee that if Annette is awake and coherent, she will ask me how I am doing, and sympathize with me if I say anything negative going on in my life. That's just how she is. Her concern for others is overwhelming, and honestly, there are a few people out there who could take some lessons from her.

Ok, I have a stinky stinky child in need of my care. One day that candle will just have one wick.....

Shame on That Boy!

It's just wrong....I cannot get the songs out of my head! It would be one thing if they were songs about rainbows and butterflies, but they're not...they're totally inappropriate songs to sing in public, and I curse that Stephen Lynch for being the talented guy that he is. I catch myself humming songs all of the time, which is better than singing the words that go with the tune, but still.

I wake up, there's Stephen singing in my head. He really has no business being in my shower with me, but he's there! I drive to work, and there's Stephen singing in my head (and my car since I play his cd's...guess that isn't helping the cause). I sit at work doing crafts with the kids and there's Stephen singing in my head. Day in, day out, and just when I go oh, an hour or so without a Stephen Lynch song in my head, I hear Dion humming one of the tunes or emailing me a line from a song. Man! We suck.

One of the songs that Stephen wrote is called "Voices in My Head". I can now relate, for he is stuck there with his almighty vocal range and lyrical schemes. He's full of shenanigans and it would be best for one to be warned that the songs will NEVER get out of your head. Seriously, how can I sit making winter decorations with kids whilst singing "Damn, that's an ugly baby...."? I cannot. But it will not get out of my head. Get out I say! Ok, really, I don't want them out because the tunes are catchy, even if the "songs tend to push the envelope".

Is it me, or am I just getting old?

Sigh. That is a sigh of defeat, a sigh of sadness, a sigh of dang-it-I-am-not-24-anymore. Why all of the hot air, you ask? Simple. I am not what I used to be, in more ways than one, I guess. But in this case, I am referring to my aging body. We found out the results of my tests, and the verdict is in....I am getting old(er). My chest x-ray was fine, my bone density test was great, my CT of my shoulder showed no cancer a brewing in there, and then there's my bloodwork. Ahhh....the bloodwork. My newly found arch enemy most certainly has turned on me. Everything came out fantastic, until the little numbers for my cholesterol found their way to my doctor. As one of my friends said, I am one of those people in the high cholesterol commercials who walk into a glass door. Yes, I am hanging my head in shame of the number that follows....250. EEEEKKKK!!! Normal is under 200. Yikes! We won't even go into my triglycerides. My oncologist blamed it on the pumpkin pie from Thanksgiving, and I really didn't have the heart to tell him that I didn't have any pumpkin pie. So, he has added another cholesterol check for my next routine bloodwork. I have some work to do I guess.

So my shoulder....my onc seems to think that it is possible that I have a partial tear in my rotator cuff. I looked at Dion when he said that, who replied, "Well that's odd. That usually happens to baseball players." There was a dramatic pause between us, to which I filled with, "My job." Dion answered with, "Too much Dodgeball." I will be seeing an orthopedic surgeon next week to see what he can see. Maybe it's not even a tear, but a muscle or something. I really don't have time for this kind of foolishness. We'll see....

Well, Dion is going out of town for work tomorrow through Sunday, so this is going to be a short one. Maybe the need to write will strike me when he is gone. Or maybe not.

Untitled Entry

I have no idea why I put that as the title, but I was under a lot of pressure to think of one, and I cracked. I could put "Thanksgiving" or "Dion is Sleeping on the Couch and the girls are Napping so I Thought I Would Blog" but I don't think that would fit in the space provided for me. So, there it is. Like I said, everyone is sleeping here, and I thought maybe I would tempt fate and start writing (the girls usually wake up about 5 minutes into my thoughts) and see what happens.

My mom lost her voice 3 days ago, so now every time I talk to her I have to try very hard not to whisper back. I have noticed though that people either whisper or yell when they talk to her. Dion loudly annunciated to her last night, which made me laugh. I don't think he knew he was doing that, but it was funny. We had a nice get together, a nice meal, a nice day all together. It has been lightly snowing all day, and it looks so pretty. I am glad that we didn't have to travel though. It's hard enough with a 3 year old and 20 month old, then you throw in bad weather and the fun begins.

I have been busy busy. Now that the weather has turned on me, I have started doing things on the inside of the house. I rag painted the living room, hung a border in the laundry room along with building shelves, etc for folding clothes. Literally. I had to saw through the pressed wood, which was not very easy. I got it all done in about 3 hours. Maybe I shall post a picture of it. I even hung up a closet rod. The system is working well, and now I am thinking of the next project to tackle. At some point I would like to build a workshop in one of our basement storage rooms. Maybe that will be the next adventure. I miss the workshop we had at our old house, but it would be nice to build one how we want it.

Ok, this is kind of a boring post. If I am bored with it, you must be ready to take me off of your favorite list....I am on your favorite list, aren't I? Ok, so maybe there should be a "I kind of like it, when I have nothing better to do" list. I shall write a letter.

Oh....I don't know...

I was just in the mood to write, but alas, I have nothing to scribe about. I probably do, if I thought a little bit, but you understand that it is the day before Thanksgiving, the last day of the work week, the day before I gain an extra 10 pounds. Well, maybe not 10 pounds, but I am thinking of wear my old maternity pants with the elastic panel. No, I won't do that....maybe.

Have I told you that we belong to the elite group Netflix? It is so awesome. We get 3 movies at a time, for as long as we want (do I sound like the commercial?), which for us varies a bit. Anyway, one of the more recent movies we got was Airplane. What can one say about that movie? I think Dion was a little shocked that I could recite some of the less common lines of the movie. At one point he said "Gosh, I thought I knew a lot of the lines." I do know now though, that when I watched Airplane as a child, that I obviously didn't "get" all of the humor. Even when it was edited for television, I seemed to miss some of the humor. For example, when they said that the two guys were talking jive, I actually thought, as a kid, that they were speaking another language. Ahhhhh.....silly kid. So, I spent a good amount of time laughing at the old movie. Some humor never dies.

Tomorrow Claire's cousin Kaitlyn and her family are coming to visit. Claire and Kaitlyn are about 3 months apart, and love each other to death. Claire proclaimed to our daycare lady today, "My cousin Kaitlyn is coming tomorrow!" To say that she is excited would be an understatement. This weekend is the holiday stroll downtown, so I am hoping that we will have ok weather and maybe my sister-in-law and I can take the girls. I think there's a parade, they light up the downtown Christmas lights, there are carolers dressed up from the past, it could be fun. Or it could not. But there's only one way to find out.

Oh. I supposed I should do an update on my shoulder. On Tuesday, since the port study didn't really tell us anything about my shoulder pain, I was squeezed in to have an ultra sound of my neck, shoulder, and arm. They were on a mission of finding a clot, if there was one, and possibly that is what was causing my pain. Nothing. Nada. Zip. No clot, which is really good, but....Anyway, Beth came into the room to tell me that they found nothing and suggested that maybe it's because I am getting old and getting arthritis. My response to her was to throw the washcloth at her. Old. Whatever. And although she was kidding (kind of) it was still a Sue Flaska mystery on why I was having pain. So I go to Mayo for treatment. I talked to the nurse, who called my oncologist. He said uh-uhhhh to using the port and ok'd the nurse to use my left arm. He wants to find out what is causing the pain before they use the port again. Now, along with my bloodwork, chest X-ray, and bone density test this coming Monday, he has added a CT scan of my neck and shoulder. So instead of being crabby about all of this, I have decided that I will be thankful (thankful...get it? It's almost Thanksgiving...ah! What do you know about humor? Just kidding...you are very funny.) that I have an oncologist who will search high and low to find out what is causing the pain. Arthritis? Broken bone? Cancer? He'll find it. I hope.

My most recent fear...ok, not most recent, but always....is that it is the cancer returning. I keep repeating in my head what I have been told over and over. The type of cancer I had, if it were to recur, would most likely recur within 2 years. I am at month 20 right now. Now I know that it doesn't mean that it will never come back. If any doctor says that to me, I will run the other way. There's no way for ANYONE to know for sure. I know of some woman who were 10 years out and it came back, so I don't want to be fed any crap of you're cured forever. There is no forever. Oh. I got a little side-tracked. So there it is. It's out on the table. I am scared and worried, and will sleep better after Tuesday when I get all of my results. The well used line of "It's probably nothing" is probably what is going through your head. I hate that phrase. If you take anything from me, take this. When that is said to someone who has battled a life threatening disease and is now facing some more issues, we tend to get a little pissed. Now, we understand that it is being said to calm us, or even just to calm the person saying it, but in reality, what is going through my head at least, is this "But it could be something." I think I have said this before, I will never EVER go into another doctor appointment, NOT prepared for the worst. That could be seen as a negative thought, but I don't think it is. I think it is realistic. Like I told the co-worker whose daughter is battling pancreatic cancer with all of her heart and soul, hope for the best, prepare for the worst. That's all we can do. That's all that can get us by. I will NEVER be blind-sided again with a diagnosis. That doesn't mean I wouldn't be sad or scared or angry with whatever I had to face, I would just be ready. My foot will be at the start line, ready to take off running to whatever it is I have to conquer. Not running away, just running to. What is it that I am running "to"? Hell if I know.

go speed racer, go speed racer, go speed racer go!

fish lips

No Rest for the Weary

Have I mentioned how much I do not like my port? I have decided that once this object is out of my body, I will be keeping it and it will be going into my cancer box, right along side of my fake boobs, the baggie of my old hair, info books, all the cards and balloons I got, etc. What an odd thing this cancer box has turned out to be. But anyway....

I have been having shoulder pains for a few weeks. At first I thought maybe my purse was getting too heavy, so I cleaned that out a bit. Then I thought well maybe it's from playing gym games with the kids at work, but I haven't played gym games in a bit since we could not use the gym because of the school concerts. So hell's bells. Today at work while I was writing out all of the bills for parents, my arm started hurting, along with the shoulder and neck pain. Well, to make a long story short, I had a port study done today where they inject contrast into the port and watch it on an x-ray to make sure that it is flowing properly. The tubing was working ok, but at the tip of the catheter the flow had decreased and the radiologist described it as a trickle. So to make another long story short, I am having an ultrasound of my arm tomorrow to make sure that a blood clot hasn't formed. I'm not sure of what else could cause pain in my shoulder, arm, and neck, but I would be happy if it were to stop. How many more weeks of treatment do I have left, you ask? 20 long weeks. Ugh. Is it so wrong for me to just be tired of all of this? I just want to get on with my life and not deal with procedures, ports, treatment, hospitals, blood draws, tumor markers, scans, x-rays, aches and pains, blah blah blah blah frickin blah. Ok. I feel a little better after this mock venting. Baby steps, right? Little tiny steps to being a survivor. Every day is a new adventure. The good, the bad, and the ugly.

A Follow Up, if I May

You will be very happy to know that I am currently watching an item on ebay. The auction has 8 days left, and it is for a little CD titled, The Muppet Hits. That's it! That is the one that I have been looking for. I must will that auction, or there will be tears. The biggest thing is waiting though, like for everything else in life. I am so pumped! Hip hip hooray for ME!!