Category Archives: The Situation

In The Clear

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This weekend my parents came up to watch the kids and our four! pets and even the fish, as Craig and I headed up to Excelsior Springs to enjoy some R&R at The Elms hotel.  And it was FABULOUS.  The hotel is historic and gorgeous, and every little detail was perfect.  There is a brand new spa area called the Grotto, which included dry and steam saunas, hots baths, steam showers, and cold showers along with the most comfortable lounger I have ever sat in.  It was heaven.  Followed by an amazing dinner and unusual cocktails from the pre-prohibition era, which were strong enough to ensure that I had absolutely zero problems with insomnia!  There was also the most unusual lap pool hidden away in the very lowest level of the hotel, it was built around columns and was shaped like a compressed O.  You could literally swim laps in circles with no flip turns required.  Hard to describe, but I’ve never seen anything like it.  There was a gorgeous heated pool outside as well which was unfortunately closed, but we did enjoy the outdoor hot tub.  It is just a fabulous get-away hotel and I HIGHLY recommend it to anyone in Kansas City.  Less than and hour drive, but it feels worlds away from home.

Unfortunately we had to follow all of the relaxation and indulgence with a trip to KU Med for a CT scan and appointment.  I definitely was not looking forward to it and the CT scan was not the best.  They couldn’t get an IV going, called in an IV “team” and she told me confidently that she does nothing besides IV’s all day long.  She couldn’t get one going either so they used a machine to find a vein and guide in the IV.  I was feel a little woozy by this point as the missed attempts in my hand didn’t feel so hot, and I hadn’t eaten since breakfast.  40 minutes after the first attempt I was finally able to go in for the scan.  I did fine on the first few passes but when they added the iodine contrast to the IV, I was ready to puke.  I made it through and spent another twenty minutes afterwards with a barf bag getting my blood sugar and blood pressure taken.  The IV nurse commented jokingly that she didn’t want to see me again, and I told her “Ditto!”.   Only I can turn a ten minute procedure into an hour plus of ridiculous.

Thankfully, I’m not going to need to worry about another contrast CT again for a very long time.  At least not for this, because my results were CLEAR!!!  Dr. Schnayder felt confident that after a clear scan we don’t need to rescan next year, there is almost NO chance of this tumor coming back.  Hallelujah! I was overjoyed and had this huge goofy grin as she told me that everything looked great- the scar, my nerves, my facial muscles.  There is absolutely no sign I ever had this surgery.  I can tell you, I read a lot about parotid tumors during this time, and joined a number of support groups and my results are definitely not the norm.  I had SUCH a good surgeon, and I feel like I’m bragging but I am just thrilled by how well this has turned out.  One more clinical check next year (which is nothing) and I can more or less pretend this never happened.   Doesn’t get much better than that!

And tonight kicks off the Quilt Bootcamp 2013 “class” that I am “teaching” to a group of friends.  I am so excited to share my love of sewing with others and can’t wait to see what everyone comes up with.  It’s going to be fun!

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6 Months

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Tomorrow will be 6 months from my parotid tumor surgery.  What an ordeal that was, and how happy I am that it is in my past! I was one of the first patients to have my incision run back under my hairline instead of down the neck under the chin, and looking back, I am very pleased with the result.  I am one of the very few patients who regained all feeling and sensitivity in my face and ear, even if it was a tortuous few weeks and months as those nerves regenerated.  No pain, no gain? Well, it’s worth it on this side of the healing process.  I sure didn’t feel that way in January!

Today my scar is all but invisible and is completely hidden by my hairline regardless.  I have fleeting pain now and again but have yet to develop any sign of Frey’s syndrome (excessive sweating in the jaw while eating) or any other complications.  I do have a weird feeling hollow space under my ear where the tumor was, it continues to sink in as time goes on but surely will stop at some point.  At any rate, I don’t think it would be noticeable to anyone but me.  I count myself lucky to escape so unscathed in the long run.  When Adam Yauch of the Beastie Boys passed away a few months ago from parotid cancer, it was a stark reminder to count my blessings.

During this entire time, I had help with inspiration and staying positive from Ashley of Little Blue Boo.  I don’t know her personally, but her story touched me in a deep way.  Whenever I was feeling especially down and sorry for myself, I would read her story again and remind myself to Choose Joy (that, or I would call my Mom and complain in tears!).  I had Craig purchase a Choose Joy necklace, and I wear it often as a reminder of all the goodness in my life.

Now, how about some nasty SCAR PICTURES???

Day After. I spared you all the ultra close-up with the nasty drain, you’re welcome.

 

One Week. Bruising from my eyes into the hairline and around my neck. Still on painkillers!

 

Two Weeks. Don’t let the smile throw you, I felt terrible. The nerves were hard at work regenerating, I felt like I was getting tasered in my face all day long.

 

6 Months. I really need to do something about those highlights. But hey, the scar is almost GONE!!

The First Day of Spring

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(You can either pretend that you are reading this yesterday, or you can pretend that today is the first day of Spring- your choice.)

 

One of my favorite, favorite, favorite songs as of late is by Noah and the Whale, titled “The First Days of Spring”.  It’s a gorgeous song full of instrumentals and I highly recommend you buy the MP3 as long as you can stand one bad word.  But since most of you won’t download it, the song starts off like this…

It’s the first day of spring
And my life is starting over again
The trees grow, the river flows
And its water will wash away my sins
For I do believe that everyone has one chance
To (mess) up their lives
But like a cut down tree, I will rise again
And I’ll be bigger and stronger than ever before

So the rest of the song is about a relationship, but that first part is pretty much exactly how I feel.  Winter was just not great. Surgery, loss, a painful and exhausting recovery, more loss, and capped off with Dad’s surgery.  It was unbelievalby tough following a very tough 2011, and I’m so glad it is over.  I’ve been so hesitant to commit this thought to perpetuity in case I somehow jinx myself, but I think I finally feel safe saying that I haven’t felt this good in years.  Literally, have not felt like this since before I was pregnant with Leah.  That’s a long time to be in physical pain and to push through life with depression and complete exhaustion, but I did it somehow and now here I am. 

I used to pray feverishly and beg God that all I wanted from life was ONE WEEK where I felt healthy more days that I felt sick.  That has been my prayer for a long, long time.  It may sound like a small thing, but it has been out of reach for me for so long.  And then all of a sudden, I have had week followed by week of good days.  A month of mostly good days.  You can’t appreciate that fully until you’ve had years and years of pain, but try to imagine how happy I’m feeling now.  Sure, some of it is the drugs, but a lot of it comes from within.  I am content, and very happy.   I can play with my kids, and talk to my friends, and go to work, and I don’t have to fake it anymore.  I’m really awesome at faking happy, but it feels great not to have to. 

There are a lot of things I am looking forward to in the future, but more than anything I am appreciating day to day life again.  It doesn’t seem like drudgery or an obstacle, it feels like a gift.  Plenty sappy enough for you?  I’m pretty sappy right now, my life is starting over again and I am ready.

 

The Happy Ending

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I know I haven’t written in awhile, and I am sorry about that.  Nothing extraordinary going on here, thank goodness, I’m just getting back in the swing of our regualr schedule.  Making dinners, back to work, playing with the kids.  I have felt so much better in the past two weeks that it is amazing.  I wouldn’t say I’m 100%, but I’m not sure I’ve ever been 100%.  Whatever this is, if feels pretty good.

Today has been a fabulous day, even if it did start off with Leah mauling Devan with scissors, cutting four of his fingers badly enough to gush blood.  That’s just life with kids.  Following that little mishap, we went to my doctor for a final checkup where she declared I looked better than she has ever seen me.  I told her I felt better than I have in a long time, and she thought my incision looked fabulous, even if it is still leaking fluid (seroma, totally normal I guess. Still ew.)  I have an ENT follow up at KU on Tuesday and then, my friends, I am DONE.  DONE, DONE, DONE with this.  No more appointments on the calendar until a follow up scan months down the road.  I did it, it’s over, I can move on.  It feels fabulous.

I followed that happy appointment with a quick trip to the Hy-Vee next door for some gluten free lucious lemon cake and chocolate cupcakes from Kneaded Specialities.  After seeing everyone’s Valentines treats on Facebook, I needed to indulge.  It’s been all I can think about and the cupcake was fabulous. The cake was good too.  I tried both before we left the parking lot.

We arrived home and the kids enjoyed playing outside in this fabulous weather while I chatted with the neighbors.  Lunch, more cake, ordered 10 yards of fabric plus a FLEA MARKET FANCY!!!!! bundle for $115 shipped, and put both kids to bed.  I’m on a shoppers high right now, and a sugar high, and a “I don’t have any current health crisis at the moment” high.  Life feels pretty sweet.

So, looking back at this whole ordeal, I’ve learned that cliches become cliches because there is so much truth to them.  NEVER tell someone a cliche when they are in the midst of a crisis, but feel free to share them afterwards because then, a person can relate.  “What doesn’t kill you makes you stronger.”  It does, it really does.  It sounds contrived, but the world seems so incredibly beautiful to me right now.  I’ve been appreciating the gorgeous winter skies, the ability to work, my fabulous children, even our disaster of a house. I get up each day and I feel so thankful for the day, and little stuff seems little in a way that I can hardly describe.  I didn’t even need a near-death expereince to benefit from this mood shift, just a darn good scare. And some good drugs.  Legal drugs.

I’m praising God for the respite from stress and hurt, and I can’t help but to hope it lasts a really long time.

Two steps forward, one and a half steps back

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I’ll be three weeks post-surgery tomorrow. I wish I could report that I feel like myself, but I just don’t. Recovery had been rather slow, a few good days sprinkled in there but a lot of exhaustion and pain. I honestly didn’t figure on this, I suppose every surgery is different but with the abdominal surgeries I was back at work a week later. I figured this would be even easier to recover from, but right now my body is just crashing.

I saw the surgeon, who felt like everything is going great. She is a great surgeon, but not so much a people person. I don’t think she felt like I had any legitimacy complaining about recovery until I’ve put in my full six weeks. In life, six weeks is a blink of an eye. When you are in pain, six weeks seems rather endless. She said this is all expected, that the tumor was large and I have a lot of internal healing to do. I know this makes perfect sense as I write it, but at the same time on some level I just can’t understand it or accept it. The scar looks good, why can’t I feel better now? I have a life to return to! Craig is tired, the kids are stir crazy, and I need to get back to work as this has not been a paid leave.

So I went to my family doctor and shared about some of the difficulties I’ve had. That I can’t tolerate the pain meds that work, and that the ones I can tolerate do little to help. How I am completely exhausted when I thought I should be getting energy back. How I can’t sleep at night thanks to the nerves sending what feels like electrical shocks zinging through my face, am having more panic attacks, can’t shake this cold, and feel like I’ve hit a massive roadblock.

She was so awesome, I love my doctor. I ended up crying in her office over the embarrassment I still feel over the fainting issue with the drain. She reassured me on so many levels that this is almost expected that I would be crashing right now, after months and months of pain and stress. She said I can think of it as part of the healing process, she assure me that they have folks faint in the office at least once a week- especially with something like a drain, and gave me some advice on adjusting some meds and supplements and some different things to try to get over the hump in the short term. She assured me I am not inadequate, and that it is going to be okay.

I can reread this and it seems stupid in a way that I am so upset that I am not at 100%, and I know everyone has been assuming I am doing great because that is more or less the image I would like to project. And life is so messy for so many, Melissa is not doing well and it breaks my heart, and others are grieving over very serious life issues and here I am upset that I can’t return to full speed as quickly as I had hoped. It sounds pretty petty, but it has been stressing me out and some day, when this is a book, I will remember what this felt like and hopefully be very thankful for my healthy life.

I actually hope to make some awesome progress the next two days as the kids are living it up at Grandmas, and all I need to do is sleep, sleep, sleep, and maybe juice some veggies and eat some protein. Hopefully some medication changes will do the trick and I will be feeling like myself again. Whatever that feels like, it’s been a really long time.

 

Stubborn

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Yesterday I was getting stir crazy and the weather was beautiful so I decided I needed to get out of the house.  I’m still not supposed to drive, because I can’t turn my head very well, and am not supposed to be lifting anything over 5 pounds, because of all of the internal stitches.  Thankfully, we live within walking distance of Target and the Mall, if you don’t mind sneaking through a small break in the brick wall like a teenager and navigating a 2:1 slope that drops you neatly in the far reaches of the Target parking lot.

I had no sooner stepped out of the door before I was accosted by two of our neighbors, both of whom have retired.  It’s a good thing, they look after us.  Both of our neighbors were insistent that one of them drive me to Target,worrying that I would pass out at the store, or slip on the hill and twist my ankle, or just generally strain myself and they also worried that Craig would be upset if he knew they let me walk that far (2 blocks).  I assured them over and over that I was fine and that I didn’t need a ride, and they worried that my purse alone was over 5 pounds (they were probably right).

Finally, we compromised and I set out for Target, walking, with a phone number in my pocket just in case I needed a ride.  I assured them one last time that I was completely capable of a short little walk and that I did not need a ride to the store.  And do you know what? I was right.  I did not need a ride to Target.

I needed a ride home.

I realized as I was checking out that I was completely exhuasted, and I realized as I was halfway across the parking lot that my neck and face were throbbing and I felt a little whoozy.  Did I call for a ride? I did not. Why?  Because, as a two-year old would tell you- I could do it myself, and I suppose also because of pride.

I felt pretty stupid as I was telling Craig this last night, and I realized how hard it is to let someone else help.  You would think it would be easy.  But there is this thing about wanting to prove to everyone how capable I am and how tough, and how I can get by.  It’s hard to admit when that isn’t true, and I know I’m not the only one.  I can’t tell you the number of times I’ve offered to help someone else and I’ve been brushed off politely.

So the moral of the story it, don’t be that person.  Accepting help is a good thing. In fact, I intend to call up one of my neighbors today and get a ride to the grocery store, because I can now admit that I should not be driving over there, and I certainly could not walk over there.  And I am strong and capable and I can do it myself, but just not today.

Turning the Corner

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I’ve rejoined the land of the living, and I’m feeling pretty awesome, all things considered.  I can turn my head slightly, feel the top of my ear, and even chewed some real food.  Sometimes, it’s the little things.  Emotionally, I’m feeling pretty good too.  Feeling like there is going to be a morning here soon where I am going to wake up and not be in pain for the first time in MONTHS.  And I’m going to have some energy to re-join life, and things are going to be good.  And there will not be ANY more bizarre illness in our house in 2012, because that is just the way it’s going to be. (Didn’t work for me last time, but still worth a shot.)

Yesterday, I was feeling sorry for myself and miserable as I plodded down the stairs and grabbed the mail. I returned to bed before I bothered to look through it and the first thing I picked up was a card with an out-of-state postmark.  Curious, I opened it and was immediately dumbstruck by a very generous and unexpected gift.  (You know who you are!) The kindness and love that we have been surrounded with the past week?  It’s pretty amazing.  If it weren’t so miserable, I’d have surgery every year just to be able to feel this amazing feeling of knowing so many people love us and care about us.  It would be impossible to start the year off in a bad mood, even if I wanted to.  We will be busy for a long time repaying all of this kindness, that much I know.

I was already sobbing when I opened the second card.  It was from my family in Wichita, and amongst the well wishes from my aunts was something incredibly special my grandmother’s signature.  My grandmother Pritz is dying of cancer and it isn’t going to be long now.  I haven’t been able to get down to see her because of this tumor mess and it’s been so incredibly frustrating to me.  The visit would not be for her sake though, it would have been for me.  I know she is surrounded with family and love and is going to be in a better place very soon.  The fact that I received a get wall card that she signed for me?  I can’t even tell you how special that is.  I don’t cry often, really, but I sure cried yesterday.  I cried and cried, this has all been very overwhelming.

I was hoping I would be well enough to see her before this point.  It wasn’t in the cards, but I know she knows that I love her.  I know that we are loved.  I know that I am going to heal, and that 2012 will absolutely be so much better than 2011 for us.

It’s all going to be okay.