2.14.13

Happy Valentine's Day!  Happy 11 month Birthday to Lucky! 

Not-so-happy 2 months to the day since the last time I saw Duckie alive.  I hate this.  I hate living in the "2 months since...." or "last time..." or any of the numerous other anniversaries/reminders that Duckie is gone.  Like I need a reminder - I never, ever forget. 

Well that's not true.  Sometimes, for just a moment, I do forget.  Then just like that it all comes back and I feel like I have lost him all over again. 

We didn't talk every day.  We didn't see each other but once a month if we were lucky.  We emailed a couple times a month.  But I still miss him.  I hate opening up an email with the intention of sending him a new picture of Lucky.  I hate that I didn't get to send him the "Valentine Hug" from Lucky like I got to send to Walleye's brother and to my sister and to her Grandparents in their valentine cards.  I am so sad that he is missing out on all these things.  I know he really, honestly isn't missing anything because he is enjoying them right along with us just from a little bit farther away.  It just sucks that we all aren't able to enjoy these things together. 

This is not the direction I ever imagined my blog to go.  I don't like that post after post is so sad and depressing.  So, I will end this post with some fun things...

Our daycare lady had a baby so for the past two weeks we have had live-in nannies...my parents for a few days, then my sister and now my parents again.  It's been awesome!  And I am so thankful they are all getting to spend some much needed, quality time with each other. 

My parents demanded Walleye and I go out for dinner tonight to celebrate Valentine's Day - free babysitter...heck yeah!

Lucky is fast becoming a toddler and no longer a baby.  She crawls so fast and with such intensity.  She loves finger foods.  Is starting to use a sippy cup - well learning to use one at least.

She can do "so big" and give "high fives" and the other day she said "daddy" while pointing to a photo of Walleye on the wall.  It's this embarrassingly huge, life size canvas from our photographer of one of our engagement photos.  We want to take it down but the photographer is a friend of ours and we don't want to hurt his feelings and now that Lucky loves that photo we'll have to wait.  My sister said she will stare and stare at it and if you ask her when Walleye and I are gone where we are she points to it.

Her hair in the past few days seems to be growing by the minute -longer, thicker and coarser. 

We were able to celebrate my Grandma's 90th birthday last weekend.  It was so fun to see her with Grandma!  So nice to see so many loved ones.  Even Grandma's identical twin sister was able to come!

We are getting a nice sized tax refund back so are buying a big, comfy, ridiculously expensive king-sized bed!  Oh I cannot wait!!!

His voice...

tonight will be one month since the last time I heard Duckie's voice.  One whole month.  How can that be?  He was interviewed on the local news a few years back about his job - it's on my DVR.  Locked, so it can't be deleted.  I have a voicemail from him on my cell phone from this fall.  I hit save every time I get the noticed it's about to expire.  I haven't watched or listened to either yet, I am not sure I can but I am keeping them so I never forget his voice.  Thankfully I can still hear when I remember him.  But it's only been a month...already been a month.

Saturday will be one month since he passed away and the last time I ever saw his earthly body. 

This past month has been a blur.  The first few weeks after he passed away I don't remember much and what I do remember I can't tell you what happened when - days seem to have melded together into one long, exhausting, nightmarish day. 

What I do remember is the outpouring of love, support and prayers myself and my family have received. 

I never before in my life have felt the prayers of loved ones, friends, family and even perfect strangers as strong as I have this past month.

And for that I am grateful.

As much as Lucky has helped me get through this, the love, prayers and support of others have as well. 

There have been so many nice gestures - food being given to us, flowers/plants, memorial donations, a gift card to a local nursery, trinkets, phone calls, emails, texts, hugs and prayers. 

I got an out-of the-blue call from a friend whom I hadn't seen in months, the other day.  She wanted to get together and have drinks or dinner.  I know she's busy and lives almost an hour from me. 

The flowers Walleye brought me the other day because I was having a sad day.  Purple and pink daisies. 

The "Beloved Brother" stone my dear friend gave me this week. The day after I got a gift card to the local nursery where we plan on buying some bushes or a tree in honor of Duckie.  And now that stone can go by whatever we purchase.

The random "thinking of you today"  or "how are you doing" texts and emails I get from various people any given day. 

The list could go on and on.  It helps, it may hurt or bring me to tears at the time but it helps. And I am truly grateful. 

But dang it I still miss him.  And it still hurts so much.  Please tell me it gets easier? 

God's plan and ever perfect timing

During our IF struggles I clung to what so many others were telling me – that God has a plan and if his plan includes a baby for Walleye and I it would be in his time and that timing would be perfect.  I tried so hard to hold onto, to believe it and to be comforted by it. 

To be honest once we got pregnant I didn’t really think much more about it.  I was grateful for Lucky and realized that we were pretty “lucky” in that we only had to wait not quite a year and a half when others have had to wait so much longer. 

I enjoyed every minute of my pregnancy and have enjoyed every day of the last 10 months since Lucky was born.  Not really ever thinking about the timing but always being thankful He answered our prayers and made us parents.

We got pregnant a few months after Duckie found out about the cancer.  My sister and I talked a few times about how thankful we were to have my pregnancy to help bring joy and excitement for our family when talking about the future.  We both felt it was just what our family needed during such a sad time.  It was a glimmer of hope and joy for the future.

Once Lucky was born I didn’t really give it much more thought.  Even when we got bad news that his year of three times a week shots didn’t work, and each time we heard the cancer had spread again. Each time a treatment failed.  Lucky was always there and was always a bright spot in my day but I didn’t really think about the timing of everything.

Even the blur of the first few days and weeks after Duckie passed away we all said we were thankful for the distraction Lucky brought but it really didn’t dawn on me until yesterday.  I don’t know why yesterday, not quite a month to the date of Duckie’s passing, but yesterday it really hit me how perfect God’s plan is.    

I honestly don’t know what my family and I would have done this Christmas without her.  I just can’t help but truly believe that all along God knew that we needed her, at the age she is now, to get us through Christmas – and quite honestly Duckie’s courageous battle with and eventual death from cancer.

She is at such a fun age right now.  Her smile can melt even the coldest of hearts.  She’s showing her personality more and more each day.  She didn’t quite “get” Christmas this year but she was a lot more fun than, say a 2 month old would have been.  (Nothing against 2 month olds!) She’s hitting new milestones – more teeth, crawling, self-feeding bits and pieces, etc – and they are fun (well ok maybe not the teething!) and exciting and for just a minute they help me forget the huge hole in my heart. 

This is a long one...

So much has happened in the two months and two days since I posted last.  It’s really hard to believe that it has only been two months.  It feels like a lifetime.

I wish I could say those two months were filled with many happy times and that I wasn’t writing this with a completely broken and shattered heart and spirit.

The second week of November Lucky got sick. At the same time Walleye and I were sick.  We thought it was just another ear infection but when she started having diarrhea and projectile vomiting.  Add in that noises, not necessarily loud noises, startled her and she seemed to have a stiff neck.  We took her to her pediatrician who right away could tell she was very sick and within 15 minutes had us on our way to the ER to be tested for meningitis.  It was so severe the Pediatrician asked if we wanted an ambulance but we figured it would be quicker if we took her ourselves right then and the pediatrician made sure one of us sat in the back with her to watch her.  It was so scary. 

So after an agonizing drive across town we go to the ER and was rushed in and they started tests on her.  Including the spinal tap.  It was horrific.  The test came back at a 7 and anything over a 5 they have to culture and watch for a few days.  They said it could have been partially treated meningitis but that they weren’t sure – Lucky had been on and off antibiotics for a couple weeks prior and had just started a new antibiotic for the ear infection two days prior.  So they admitted her to the hospital while they waited for the culture results.

Over the next few days her fever rose and fell numerous times, she had an IV with fluids and antibiotics and stayed in the hospital – where we never left her side.  After 72 hours of nothing growing in the cultures the Dr. said if she started eating better they’d let her go and were just chalking it up to a bad viral infection.  I don’t know if she understood the Dr. or what but that very next meal she ate like a rock star and we were out of the hospital 18 hours later! 

Thankfully Lucky recovered and recovered quite quickly but she is not at all fond of people in blue scrubs or white lab coats.  I would not be either after all the poking and prodding she had to go through at such a young age.  We are so grateful she made a full recovery.  

During that time Walleye had to have an abscess drained and all the “fun” that goes along with that.  And I battled a pretty nasty cold.  

The Tuesday before Thanksgiving Duckie had some tests done and we found out the cancer had spread again (brain, bone, and liver) and that they were going to up his pills again.  They suggested he go to the Mayo or U of M to discuss other treatments.  He chose the U and had an appointment the end of November. 

We were able to have a nice Thanksgiving dinner with my parents, sister and brother and then Thanksgiving supper with Walleye’s parents, brother and aunt.  Black Friday my sister and sister/cousin/best friend and I were able to do our annual Black Friday shopping. 

After Thanksgiving, Duckie went to his appointment at the U and they gave him a couple options.  He chose the one that would allow him to not have a hospital stay and to be able to get the treatment in our home town.  He did not want to have to continue to go to the cities, a two hour one way drive, for treatment.  He felt strongly that he should get treatment in our hometown hospital at their cancer center.  I can’t blame him one bit. 

So insurance, the U and our hometown hospital got to work getting things set up for treatment.  It would be a couple weeks.

In the meantime Walleye ended up having to have surgery on the abscess as it didn’t heal.  He needed to be off work for at least a week and change and pack the dressing numerous times a day.  He needed to take a shower and sitz bath after every bowel movement and was in quite a bit of pain.

Two days later Duckie was scheduled to start his first treatment of this brand new chemo. 

They tried to get the chemo in his arm but had a hard time getting the IV in and once they finally did when they flushed it his arm swelled up.  Then they decided to try the foot.  They were able to get the IV in the foot quickly and easily but right before they were to administer the chemo they were told it was not allowed to be administered into the foot.  We haven’t heard why.  So they decided to put a port in. 

By that point Duckie had had enough and said he wanted to just come back the next day but apparently the chemo was good only for that day and they nurses kept telling him it was so expensive that they really should do it that day.  He finally agreed.  Then it was a matter of finding a Dr. that could put one in that day yet.  Finally mid-afternoon a Dr. agreed to rework his schedule and fit it in.  So Duckie went to surgery.

During surgery he aspirated.  All he had eaten or drank all day was a half a can of diet root beer at 9:30 am but still he vomited during surgery and aspirated, getting stomach fluid into his lungs.

Then things started going downhill.  Our local hospital didn’t feel they were capable to treat Duckie and they moved him to a larger hospital 45 minutes away.  At about 7 pm that night the Dr. told my parents to call Duckie’s siblings as they weren’t sure he’d make it through the night.

So I threw a few clothes in a bag, kissed Walleye good bye and headed to visit Duckie.  When I got there he was on a ventilator and had all sorts of tubes and wires everywhere and was unconscious.  They had him in the ICU, sedated and paralyzed so if he did wake up he wouldn’t try to pull any of the tubes and wires out.  

About 2 am the nurses kicked us out and said that we should go home, get some rest and come back in the morning around 9 when they did rounds.  We were back by 8 am and Duckie was starting to come to.  He was responding to our voices and as the day progressed he seemed to be getting better. 

We had an onslaught of family stop by throughout the day.  Most of my aunts and uncles.  Some of our closer cousins.  At one point they almost kicked us out of the ICU for having too many visitors and being too loud.  It sure helped though.  Maybe not Duckie but it helped us to have family around. 

Finally around 6 that night they pulled the tubes and he was able to breathe on his own.  He was really weak and they asked that we leave so he could rest.  It was such a relief to see him without all those tubes and wires.

I was back by 7 am the next morning and he was sitting up in a chair, drinking coffee.  I walked in and said “Good Morning Dorkbutt” – which is what I’ve always called him.  His response was to flip me the bird – a true Duckie response!  Never before in my life has being flipped off made me happier!  I didn’t stay too long as he was pretty weak and tired and was going to get back into bed. 

That was on a Friday.  December 14^th.  Lucky’s 9 month birthday.  I went home and Walleye, Lucky and I were going to go back down that Saturday to visit but the weather didn’t cooperate and we had a family meal with Walleye’s parents and great aunt and uncle that next day.  But I called Duckie on Saturday but had woken him up so didn’t talk long.  Sunday he wasn’t taking visitors or phone calls as he wanted to rest.   

Monday night, December 17^th, I chatted with Duckie for a bit.  Told him about Lucky’s latest developments and said I would call again soon and that I loved him.  He said I love you back – which is huge because he’s not really an express how he feels kind of guy.  That day was the 19^th anniversary of my Grandpa’s death. 

There was talk on Monday and Tuesday that Duckie may be able to get out of the hospital and go to a nursing home for rehab and then to my parents until he regained his strength.  We were all thinking and hoping before Christmas this would happen.

Tuesday, December 18^th Lucky had an ENT appointment and all looked clear.  By 6 pm she had a fever of about 100.  It was gone by the next morning so we thought maybe it was teething.   Took her daycare.  She was acting fine and not sick.  So we weren’t too worried.

Wednesday, December 19^th on my way to work one of my dear friends called to see how Duckie was and how we were all holding up.  I told her I just had this feeling that Duckie was never going to leave the hospital.  I hoped it didn’t come true and that I was just being over dramatic.

A few hours later I got a call from my Dad telling me to come home and that Duckie was asking for my sister and I. They didn’t think he’d make it through the day.   I called Walleye sobbing so hard I couldn’t even talk for the first minute or so.  We made arrangements for Lucky to stay longer at daycare – figuring Walleye could drive me down, say goodbye to Duckie and head back to pick up Lucky that evening.  Walleye picked me up and we weren’t 15 minutes down the road and he noticed he had a voicemail.  I knew before he even listened.  Duckie had passed away. 

My Dad had tried calling me but for some reason I didn’t hear the phone.  So he left me a voicemail asking me to call him back.  Then he tried Walleye and left him a message that Duckie had passed. 

I have never in my life felt a pain in my heart like that.  I screamed “no, no, no” over and over again.  Tears streaming down my face.  And then I couldn’t breathe.  I just couldn’t believe it was true.  I finally composed myself long enough to call my Dad back to hear it from him. 

My Mom was with him when he passed.  My Dad was just outside trying to find my sister’s new work number.  They are pretty sure he waited until they got there.  Mom said it was very peaceful.  She was rummaging in her purse for something and it got very quiet and still in the room and she said she knew before even looking up. 

My big brother.  Captain Cool.  Dorkbutt.  Is gone.    

This is so hard.  Some days it doesn’t even seem real.  And other days it hits me like a ton of bricks.  The strangest things can upset me – seeing a video of someone dancing to “The Twist” at a wedding, you see, that was what Duckie and I did at every wedding.  See who could twist the lowest to that song.  The simplest things can calm me.   Driving to my parents last weekend and the beautiful, sparkling snow brought Duckie to mind and very calm, peaceful feeling.  Knowing that’s he’s ok now.  He’s with our loved ones and he’s waiting for us in heaven.

Unfortunately that’s not where the stress and sadness ends.  During the few days after his passing Lucky got even more sick, turns out she had an ear infection and the a perforated ear drum.  An urgent care visit, a pediatrician visit and a visit with the ENT and a few days later she had tubes put in.

A friend of Walleye’s was killed in a snowmobiling accident.  He wasn’t good friends with him and it had been a few years since he had seen him last.  He left behind a new wife and many other loved ones.

And now, two days ago, my Dad’s Aunt/Godmother passed away. 

Still Here!

Has it really been over two months since my last post?  Things have been beyond crazy busy around here.

Duckie is holding his own.  He's been on the uber expensive brand spankin' new drug since the beginning of September and originally was on 4 pills twice a day but after a month or so they moved him down to three pills twice a day!

His friends (and my sister and I helped as much as they would let us)  put on an amazing fundraiser for him.  Friends, relatives, community members and complete strangers came out in droves and donated thousands of dollars for him.  I am completely speechless by the outpouring of love and support he has received.  He is back working - his job has been wonderful - they said as soon as the Dr cleared him to work they would find a job for him to do since he couldn't do his current job.  They, his employers, were also a major force in the fundraiser as well!

He goes back in about a month for more pictures so we will know more how things really are but for now he's living every day to the fullest and enjoying the fact that he feels good except for some tiredness and nausea. 

Work has been beyond crazy.  I am basically doing three full time jobs all by myself.  I am all for job security but this borders on absurd.  I do what I can and try very hard to not bring home the stress of it all.  I refuse, absolutely refuse, to put in more than my 40 hours. I hate being away from Lucky for those 40 hours the way it is.  And quite honestly I don't get paid near what I should for the work they expect from me.

G is doing well.  I can't believe she will be 8 months soon.  She grew out of the colic stage - not sure exactly when but it's so nice that she's a happy baby now!  As horrible as the colic was I sometimes forget just how bad it was.  I know it was bad but its so easy to forget when you look at her adorable smiling face. 

She has been battling ear infections for the past month and had roseola in the middle of it all.  She has some crazy mad wax build up and super small ear canals so her Pediatrician is recommending we take her to an ENT.  I am all for it. 

Walleye and I managed to get up north for our annual anniversary trip at the beginning of October.  Instead of staying at our usual cabin we changed locations and went four wheeling instead.  My parents and sister came to watch Lucky - they were in heaven!  I don't know who enjoyed it more...them or Lucky!

My Mom and Walleye's Mom are doing well considering all their health problems. I am so thankful for that!

Oh and the best news...Free Loader is GONE!  They broke up a month or so ago!  Can you hear the heels of my shoes clicking as I do a happy dance?  Unfortunately it happened without my BIL getting hurt - basically for the last 1.5 years she has been cheating on him (they weren't even together for 2 years!) and when he brought it up they fought and she got physical with him and ended up in jail.  We are all very relieved and thankful that relationship is over.  I hope the kids came out of it OK though. 

Happy Election Day! 

More on Duckie

I don't even know where to start.  Or really even what to say. 

I finally felt like I could talk to Duckie without crying a few days after getting the initial news so I gave him a call and it was good to talk to him.  He sounded a bit deflated (who wouldn't!) but still positive.  I don't know if he was trying to stay positive and strong for me or if he really is doing as good as he seems to. And because G and I had nothing planned on my day off on that Friday two days later we headed to my parents for Friday until Saturday.  My sister, cousin and I went to the area Relay for Life with Duckie that night.  Again, his strength amazed me.  He wanted to go at a certain time because his favorite cancer nurse was in the dunk tank and he wanted to dunk her.  Mission accomplished - only needed three of the 30 balls he got for his 20$.  It was good to spend some time with him, my parents and sister. 

The cancer has spread to his brain (which we knew - three spots, one the size of my Dad's thumb nail), liver, lungs and bone for sure.  He didn't give me much more detail than that.  I asked my parents, both seperately, just how bad it was and they both had the same answer: "Bad, really bad". 

He is did two weeks of radiation and then had a second opinion at the Ma.yo.  His insurance approved him for the new, uber expensive drug (Zel.boraf which I read costs $9,400 a week but my Mom heard $9,800 a month!) but haven't told him how much his copay will be.  Right now the drug company gave him a month's worth.  He takes 4 pills twice a day.  I don't know how long he will be on it.  About 50% of patients who take it extend their life by some degree - haven't really taken the time to find out exactly how long. 

He's starting to feel tired and naseaus.  Last weekend at my parents was the first I had seen him since he lost his hair (from the radiation). 

He didn't ask "how long" he has - said that he had been feeling so good (up until the side effects of the drug started in), ironically, that he didn't want to know.  He also mentioned that they never know for sure how long a person really has.  I can't blame him - I wouldn't want to know...well maybe I would.  I don't know. 

It’s just so surreal…so different when it’s your brother and when you are in your 30s and he’s in his 40s.  When my Grandpa F had cancer and we knew it wasn’t treatable it was sad and hard but he was 70 some and a Grandparent so you just sort of know he’s going to pass away but you don’t expect your brother to be sick and facing death at 46. 

I keep wondering if we will have any more Thanksgivings or Christmasses with him, will this be the last family reunion he'll make it to and will G ever get to know him.  That's the killer - when I think of that one it gets me every time.  Every.time.

(You have to forgive me for being so all over the board - I hope I am making at least a little sense!)

Duckie update

My big brother, Duckie, was diagnosed with Stage IV Melanoma (skin cancer) in the spring of 2011.  He underwent various treatments (lymph node removal, immunotherapy, shots three times a week for the past year, etc).  Well he had his last shot the Friday after the 4th.  We were all thrilled, none more so that Duckie.  And we were thanking God that Duckie's year of shots and tiredness and other unpleasant side effects was over. 

Then last week I get an email from my parents saying that Duckie had had a seizure at work (complete with foaming at the mouth) and so an ambulance had taken him to the ER and he was given an MRI and scheduled for the PET scan for later in the week.  They would see the Dr on Monday (today) to review the MRI and PET scans and form a plan of action.  They did know he had a tumor on his brain and that they would start radiation on Monday but that brain surgery might be a possibility.  Friday after his PET scan they made a mask for his radiation.  He and his dog were staying with them for the time being as the Dr said he shouldn't be along for a while in case of other seizures.  They said Duckie was upbeat but not really ready to talk about it all yet and would call us (my sister and I) after the Dr appt on Monday. 

It was a long few days of waiting - way longer I am sure for Duckie.  I talked to him yesterday and he was extremely upbeat and positive.  Ready to start the radiation and see what the Dr had to say today.

I was so positive after hearing him and his positivity.  I thought for sure he wouldn't have to go through more than just a few weeks of radiation.  That he would be spared brain surgery.  Then his email came in this morning.

Not good.

The treatments didn't work.  The cancer has spread throughout his body.  Not just to his brain. 

He will still do two weeks radiation to the spots on his brain but for the rest of his body will most likely try a newer pill, Zel.boraf, which has good success at holding the cancer back.  But it is not a cure.

He will go to the Ma.yo for a second opinion in a few weeks.  He was treated at the Ma.yo the first time he had cancer (non-Hodg.kins Lym.phoma) 20 some years ago.

I don't even know what to think.  I can't seem to stop crying.  I can't help but think how unfair this is.  Not that I want anyone else to have cancer but why him?  Why a second time in his life?  Why did it have to spread?  Why did he have to go through the past year of shots and all that went along with it to only have it not work? 

This just isn't fair. This sucks.