Puppies and more puppies and damn you puppies

I have something to say.  And I've been holding it in or making snide remarks, but too much has come together to make this a perfect storm of a subject.  Child hood cancer.  I want to talk about it.  If you don't want to hear about it, then I suggest you leave this blog now. You have been warned. This is going to be aggressive, probably offensive to some, but the truth.  So put on your big girl/boy panties and read on if you dare.
Let's start this conversation with puppies.  We love puppies.  We have had several. We have had to potty train them, pick up after their messes, teach them to not tear up everything or eat all of Jack's army men.  We carefully selected our breeds based on our lifestyle.  We also did so as a family/couple.  If we didn't feel it was the right time for a puppy or didn't agree on the breed, we didn't get the puppy.  We didn't ask for Facebook's permission or "likes" to get a puppy, nor did we have our kids do that.  We chose this responsibility on our own and didn't pimp our kids out for 15 minutes of fame.  However, I do run a page on my daughter and share our life with those who want to know what the journey of childhood cancer is.  I pimp out my kid for cancer research funds.  Horrible? maybe.  But that's my choice. I also choose who I pimp her out to.  Maybe bad choice of words. Maybe I should say "represent".  I choose St Jude and more recently St Baldricks.  I have yet to hear from Good morning America about our 15 minutes of fame.  But I am not bitter.  No....not about the fame part. I could care less.  I am bitter that these damn puppies are making news.  We have so much more important stuff going on in our lives, and it needs to be addressed.  And not just childhood cancer, but that is of course my agenda.  And yes, we need feel good stories in the media to help us from feeling like things are hopeless and turning to shit at times.  But these puppies get on my damn nerves!! I cannot even get people to donate to St Baldricks for my head shave or ask them to "like" my page, but these kids get a puppy?? I know, you like the page/picture of the kids, and then your job is over.  If you were to follow my story or like my page, you are on a journey with me.  Sometimes hilarious, sometimes sad, and sometimes tragic.  But you know what......when you like my page, status, picture, etc you aren't just helping a family of 5 kids get a puppy.  You are spreading awareness for the 46 children each day who get cancer.  That is a big responsibility.  And yes, I will hold you to it.  You cannot simply just like and move on. I'll ask and keep asking. I'll rephrase and offer different scenarios or solutions.  So yes, there is a commitment and responsibility that comes with following our journey.
So while I stew down over the puppies (wow evokes lots of emotion in me should have taken a xanax before this post), let's talk about childhood cancer awareness.  First, there is a petition going around that needs signatures to turn the White House Gold for September.  Needs at leave 14,000 signatures, last I checked it was close to 11 grand.  And that has been going around for months! Yes there is a little more involved in signing a petition.  But wouldn't that be feel good news?? How wonderful that the White House would recognize our children? That sure would make my heart happy.  Second, let's talk about St Jude.  Recently a conversation in one of the ALL mom support groups went something like this "I hate the infomercials that St Jude does because they are so sad and something to the effect that they are a powerhouse"  Ok so those are not direct quotes, but its pretty much the gist of it.  First of all....seriously?? you are a mother of a cancer child and you can't watch a commercial about a cancer child because its sad???? Second, you feel as if St Jude takes away funding from other hospitals because of their "powerhouse" status?? um.....pretty sure St Jude put childhood cancer on the map and minds of many.  So they have not only earned their right as powerhouse, they do so while also freely sharing their research at no cost.  Running an organization where 85 cents of every dollar goes directly to the research/kids fighting.  And YOUR hospital uses the protocols from St Jude.  So its not about this 'competing' for funds.  Every cent that goes to a reputable hospital or organization that represents childhood cancer is a "win" for our kids.  I don't care if its St Jude or St Baldricks or a local hospital.  When you start conversations like this, you aren't banding together, you are competing for power from a horrible disease.  Which btw, seems to be the agenda of this particular mom support group, which I am no longer a part of because I liked to use the eff word too much.  So, I had to disclose that information so you are well aware that yes, I already have beef with this group, so maybe my opinion is biased.  It is MY opinion.  And when you start bashing St Jude, you are calling my baby ugly.  St Jude is the hospital that saved my child's life.  And I know lots and lots of other moms who go to other facilities who have saved their children's life, and they love them as much as I love St Jude.  But we don't bash each other's hospital.  We embrace them, we talk about the differences, similarities, and how we can all benefit from the knowledge.  What a great thing!! When you start to denounce hospitals, people, groups, etc because you are worried they are going to "take you 15 minutes of fame" you are not an ally...at least not in my opinion.  You are the problem.
Ok, so let me back track for a minute to the oh so sad infomercials.  Are they sad?? Do people want to click off the station? absolutely!! They evoke emotion.  That is the point.  Come on...you saw 5 kids with a sign that asked for a puppy and that evoked enough emotion for you to "like" it.  This is the same thing, except a different emotion with a little more responsibility.  And organizations have been doing this for years to feed kids in Africa or help puppies who are close to being euthanized.  Why??? because it works.  Sad that it works, but it does.  Now with that said, St Jude does a wonderful campaign of thanks and giving that is happy and joyful.  And people complain about that too!! They say our kids are not always like that and treatment is hell.  Well there you go...can't please everyone.  But the messages are still the same by evoking different emotions.  Very well done, St Jude. Well done.
So let's digress a minute and cover the important topics that I have covered. I really want you to walk away from this reading and have some great "take aways".  Can you tell I was a manager once with my manager speak?  ;)
1.  Puppies are cute
2.  it takes more than just facebook likes to care for a puppy.
3.  St Jude is a powerhouse who saved my daughters life
4.  There are so many great children's hospitals that treat cancer kids, and I love the comrade I have with the woman of the children who attend these facilities
5.  we need more signatures to turn the white house gold (go now)
6.  childhood cancer is sad....very sad.
7.  I am really having issues with this puppy thing and probably isn't healthy and should seek counsel regarding such issues
8.  I pimp my daughter out for cancer awareness, research, funding, etc because I want to save her life, her friend's lives, and her children's lives.
9. I need some donations for my St Baldrick's Shave in June (which will have its own blog soon)
10. As the Beatles would say "Come together....right now....over me"  Or "Hey, Jude..."  or "Help, I need somebody help"
ok so that last one was thrown in there because Lucy is listening to the Beatles while I type this!
Whew....rant over. Thank you to those who patiently stayed to the end.
oh, and if I start getting posts on my FB wall about puppies, I'm likely to probably go off the deep end ;)

Because we didn't have enough on our plate?

The past two weeks have really been a blur since I went back to work.  It seems as if we have no time for anything anymore. I get up, get ready, get Jack on the bus, go to work, come home, make dinner, get kids in the bath, and then its bedtime.  Oh, I remember this pattern.  It was one we had prior to diagnosis.  While its good to be back to semi "normal", I remember now the misery that encompassed our lives as well prior to diagnosis.  Of course things weren't quite as horrible as cancer, right? So we would take that back any day. But now, we have our new cancer life and our old routine life.  Not a good mix.  I never realized how much working from home was so helpful in regards to our mental well being as well as time.  Time is so precious to us, and I feel like we are being rushed again, and that saddens me.  Trying to find that balance again has been hard.  So, I wonder if that pent up stress along with some issues Lucy is having is what ultimately caused our tragic event this week.
Lucy and I went to clinic on Wednesday like normal.  She was sick the night before throwing up, but had no fever, so I guessed her liver enzymes were too high.  This happens when her liver has a hard time filtering the chemo and needs a break.  She had also had the worst dex pulse ever with tons of pain. So bad, I had to go get her morhpine.  We haven't had to have that since our first week of diagnosis.  When we got to clinic, I told them she threw up the night before, and I was pretty sure it was due to her liver, but maybe isolation would be good for us just in case.  So, as the blood results came back, I was right.  Her AST/ALT were elevated pretty high. Higher than its been since august of 2011.  Funny how mama's intuition still works, sometimes I wish it didn't.  So we decided to do a chemo hold and give her liver a break and do a count recheck today.  The doc also said that she could be coming down with a virus and that was adding to the enzyme level.  The liver is just mad at us. So we left clinic and decided to grab Zach's birthday cake on the way home.  He turned 31 on Wednesday!
We were approximately, 1 mile from home when I rear ended a car.  And not just a small bump either. :(  I hit that car with so much force that the air bags went off and the engine flew from the bottom of the van to the back and landed on the street behind it.  How did this happen??? The cop asked me the same question.  I said "I have no idea".  I could have sworn the car was not stopped, and then it was.  I am not sure if it stopped suddenly or I just thought it did.  I wasn't distracted (at least not physically), so I honestly cannot tell you how it happened.  As soon as it happened, this pain went through my hand like you wouldn't believe.  The air bag had hit it.  And my leg was also starting to burn.  I quickly asked Lucy "Are you ok?"  She took off her headphones (she was watching a movie), and said "What was that? What happened". She was still snug in her car seat and seat belt and hadn't moved an inch.  Matter of fact, entire inside of the van was ok.  Nothing was really moved except the windshield was shattered and both airbags had gone off.  A gentleman who happened to be a fireman was in the area and quickly asked me if I was ok. I was in shock.  I had no idea what happened, I asked that he check on Lucy.  Lucy was in near tears when she saw me crying.  I said "are you hurt?" She said "no, I'm scared because you are crying". So I tried to stop quickly, and I found my phone in my purse and called Zach to tell him to come get us. Mind you...we were a mile from home.  Not even I bet.  He got there quickly and Lucy was smiling when she saw him.  I asked if the other driver was ok and wanted to get out of the van, but they wouldn't let me.  Finally, Zach got Lucy out and the ambulance worker moved me to the ambulance to check my injuries. I refused to go to the hospital. I could walk and was just a little shaken.  I had gotten a pretty good bruise from my leg hitting the steering wheel and my hand is swollen (probably a hairline fracture but there isn't anything they can do for that).  So what a crappy day.  Zach was awesome.  He said "Gee hon I didn't need this big of a birthday present".
So, the accident was my fault (it is always the persons fault who does the rear ending), so I got a ticket.  My first ticket in 18 years.  And after we did all of our insurance stuff and statements to police, we went home.  I cried and cried and cried.  I tried to replay the scene and figure out what happened.  What distracted me? I still don't know.  I wonder if the stress just overtook me from the appointment.
That night we still celebrated Zach's birthday. I mean so we have a totaled van, but Lucy and I walked out of it with me having a couple of bruises.  So that was also something to celebrate. So around bed time, Lucy started feeling warm :(  So we took her temp and dammit!  It was 100.4.  That is our cut off for going inpatient. So we called our onc who was on call, and he suggested we retake it in an hour and push fluids. She had just come off dex, and it isn't uncommon for her to run low grade fevers after it.  Plus there are so many sick people in the hospital, it was best we stay home since her counts were at least high.  So we rechecked in an hour and it had gone down to 100.1.  So, we went to bed, and set an alarm for every hour and checked it.  By 3 am, it was finally normal.
Whew!  What a long long day.  So that is how Zach got to spend his 31 birthday.  We are waiting on the collision place to tell us how much damage and if its a total loss.  So far they were at $12,000 damage and the claims adjuster wanted to see if it was worth fixing or totalling out.  That is where we are at today.  Lucy has to get her liver rechecked today, I have to get xrays, and we have to figure out a rental car.  Awesome right?? I am thankful we are ok.  That is what matters. We bought the Memphis Belle to get us to St Jude and back safely, and it did its job.  It kept us safe.
I have posted some pics....Let's hope that our plate starts to become less full, and that we learn to adjust to the new stressors introduced back into our life, and that Lucy's body starts to mend from the poison we put in it daily.

Empathy--Either you have it...or your a(n) (insert choice word here)

Empathy -is the capacity to recognize emotions that are being experienced by another sentient or fictional being. One may need to have a certain amount of empathy before being able to experience compassion.

I did it! I went back to the office.  And there are all sorts of emotions surrounding this ordeal.  I know I have been fortunate to have had a company give me the option of working from home for the past 2 years, as some people don't have that opportunity, but it doesn't make going back any easier.  Let's talk about this.

Thursday: I went to my old location since I am being moved to a new position.  I thought this would be great! a perfect way to step into old familiar faces and grab my belongings.  I was wrong....wrong wrong wrong.  So I go in and get to see my favorite face, our security guard. Oh how I love her so.  She is so nice and kind and always asks about Lucy.  Then I see some familiar faces down the hallway, so I go down to say hello.  One person out of 3 said hello and gave me a big hug.  The other slammed her door when I walked over there.  That was nice.  Nice touch.  That's ok, we didn't get along very well anyhow when I worked there for 4 years.  And since she hasn't asked me once how Lucy has been since diagnosis, it was of no consequence, just a bad reminder is all.  So after I chit chatted with one of the ladies, I went to get my stuff and start sorting. I had 6 boxes! Why in the hell I had 6 boxes is beyond me.  That is when the emotions kicked in hard.  I opened the first box and you know what it was filled with?  Pictures....Pictures of our life before...before cancer.  My heart started racing and my brain immediately took me back to day 1 of diagnosis.  I started sweating and getting nauseous.  woo...I had to take a break!  So I went to the bathroom before trying to open up the other boxes.  Mostly it looked as if somebody just took their hand and swooped all my belonging into a box, and even some things that weren't mine. There were broken mugs and even some things I had no clue what they were, but they were in my boxes.  So that was an easy box...trash.  I then went to open another, and I'll be damned.  More pictures.  This time, they were of Lucy at her birthday.  She probably had cancer then, and we didn't know it.  And then sitting at the bottom of the box was one lonely Christmas present.  A gift I had bought at the company store for fun that I had forgotten to take home the day before.  That pretty much did me in.  I left, dry heaved in the parking lot, and came straight home.  I made it 2 hours.  2 hours before I started bawling and was a complete mess.  It was such an unhappy place to be.  I wasn't all that happy working there before Lucy's diagnosis, so it was even harder to go back now.  I am happy that I am starting fresh at a new location with new co-workers (some old ones too). I really hope I never have to go back to that place again.  I didn't realize how unhappy I was until I took a step back.  Plus the memory of Lucy and our life BC (before cancer) is wrapped up in that building. Lucy was not even a year old when I started there.  

Friday:  I get ready for work and am running late. I 'm always late. Only it wasn't because I was unprepared which is the norm. It was because I had a panic attack that was so horrible, I couldn't even see straight.  The dizziness was a nice touch.  After downing my happy pills, I jumped in the shower, and I actually put on make up.  That's nice.  And different.  While I love my pajamas, its nice to get up and take a shower every day!! I was lucky to take one once a week before.  Not saying that I don't change into them the second I get off work, but for a few hours to wear makeup and smell good is a nice change.  I made it to work by 9:30 on Friday. I had hoped to make it there by 8:30, so an hour late wasn't horrible.  And my actual "report back to the office" date wasn't until Monday anyhow, so this was just a way to help me acclimate around people.  I think what I fear the most is that I have lost my filter and patience for people.  I no longer see insignificant things as important, and I no longer mind telling people about it.  That isn't a good quality when you work in a corporate environment.  So far, so good. I did share this fear with my new manager, he assured me I would be just fine.  I hope he's right.  So I spent 4 hours at work on Friday.  It was weird.  Mostly I was unpacking my boxes, getting to know my location, and had a meeting with some co-workers.  

I have to say it was so nice to come home that Friday night and know that I wouldn't have to get on my laptop and do any work.  I haven't been able to say that for 2 years.  That is a total bonus to working in the office, and not being in a management position any longer.  You truly work in the office, then you come home.  And home is home.  It hasn't been that way for me for the last 5 years.  

Monday-- I did MUCH better!! I was actually at work by 9 and stayed until 5.  A full day!  And it was so quiet.  No screaming kids, no laundry or food to make.  Just work.  Well, I didn't do such a great job with sitting in my cube and just working.  I think I am going to have to buy some headphones.  I need noise!  But I will admit, taking care of me, and just me, was really nice.  And I don't just mean that in the sense of home and taking care of kids, dogs, husband, etc, I mean that also in terms of management.  I didn't have people coming into my office to tattle on each other, I didn't have to put out fires, and I didn't have drama of people stepping on one another to climb the corporate ladder, like I was once accustom to.  I don't know why I hadn't left management a long time ago!! I got so wrapped up in my expectations of what I thought it would look like and what mark I thought I would leave, I didn't see how stressed out I was.  

Today-- Today I was there at 8:30!! woo hoo!! No nausea, no vomiting.  I was a little excited to hang up my new pictures. I was a little excited to sit in quiet and drink my coffee!  Just a little!! Today was a regular day.  I got a lot more work done than yesterday.  I'm falling into routine, but I have to say, my butt hurts.  I am not used to sitting in a chair all day.  I will have to get up and walk around to remedy that.  I even actually ate lunch at my desk.  And again...it was quiet.  I can't get over the quiet....its unnerving.  I forgot my ear buds again.  I have to remember those!! As soon as 5 rolled around, I was ready to go home. And home is another story.  Its that rushed feeling again, and I have to make sure we don't do that and get in that life style.  But when we are both at work, home is so busy in the evening. I only get a couple hours with my kids :(  and those hours are filled with dinner, baths, homework.  I miss not seeing my kids get off the bus.  There are pros/cons to this situation.  I'm trying to stick with the pros of the all around situation, but its not easy.    

Zach on the other hand isn't having a good acclimation back to work.  He has a new manager who seems to be really angry about the agreement we have been given to work from home.  I am not sure why.  You would think he would be on board and know if he was in the situation, he's working for an organization who would have his back.  Nope....apparently he lost his empathy a long time ago or never had any to begin with. And that's sad.  Zach is supposed to be able to work from home and the office and be flexible based on Lucy's needs.  Somehow and somewhere along the line, that seemed to make somebody angry.  That somebody probably doesn't have a kid with cancer.  Probably never had anybody close to them ill or had to take care of somebody they love and watch them go through pain and agony.  Empathy can't be learned, it has to be experienced.  Poor Zach ended up with a person that lacks that.  

When Lucy got sick, we were offered a work agreement. We didn't ask for it, it was graciously given to us.  Unfortunately, I don't think some people understood this or it wasn't communicated to them, and due to this we have been "banished" by some former co-workers.  Whatever.  They haven't experienced what we have, so I don't expect them to "get" it.  Anyhow, now that we are going back, our management has changed.  And for some reason, Zach's manager doesn't like the agreement.  Zach asked him why it made him so angry.  He just told Zach that he hoped he knew this wasn't going to last forever, and asked him what he had been doing for the past 2 years to plan for this return to work part time.   BWAHAHAHAHAHA  Seriously?? obviously he doesn't read my blog.  What have we been doing???? And YES! we hope this shit doesn't last forever.  And how dare he even say that.  We would wish and give anything to go back to where we were before even though it was a shit hole place to be if it meant Lucy didn't have cancer or have to go through treatments. We would gladly give back this agreement they gave us if it meant I didn't have to talk to my 5 year old son about how his sister might die.  I would gladly go back and work with that horrible co-worker if it meant I was not introduced to at least a dozen children who have died.  Actually, I wouldn't do that last one. I met some very special and wonderful angels and families.  And while I wish I didn't have to watch them die, their life, while short, was full of meaning and love. And I am aware now.  Aware of something that I refused to look at before.  And I really hope that this person understands that Lucy will NOT have cancer for her entire life.  And that we won't be in treatment for very much longer. And that we won't need such an arrangement that was OFFERED to us.  Its 3 years out of our lives.  A long 3 years- yes, but put that into perspective of a career.  Its short.  It's 3 years out of 30.  Why does somebody have to be so hurtful and hateful because we have a child we care for and get to work from home part time.  Why does that affect him?  And what about when treatment is over? Why would somebody want to basically say they are looking for ways to fire someone and take the livelihood away from a family who is already struggling as it is.  That's just cold hearted and mean.  Why does that give anybody satisfaction? Or why is that even a mission?  And to say its because its a business and work needs to get done is BS.  There are more people that work from home full time just because and in the same work capacity as Zach.  Matter of fact, they are starting a new pilot right now! We have technology on our side and can work more efficiently and effectively from wherever we plug in.  I guess I don't see the need to press the issue about this work from home thing, then again, I am biased, and do not lack empathy.

So...while going back to work for me has had its share of good/bad. Zach got the short end of the stick. 

Just in case anybody forgot : 

Empathy is the capacity to recognize emotions that are being experienced by another sentient or fictional being. One may need to have a certain amount of empathy before being able to experience compassion.