Halloween

loved all the costumes. Jeff is El Guapo specifically, even though El Guapo mostly wore black. I'm Ms. Clean...Mr. Cleans offspring.  Can you guess the others?

Halloween

I hate technology.  I just lost 3 pictures and a significant amount of text somehow while using the keyboard which has no 'delete everything' function.  Kindle fire is the worst attempt at a tablet.  spend the extra dough for the reliability.

had a nice time last night at a costume party.  Hoping to go out tonight and tomorrow but I'm currently at the hospital (since 8:45am) getting blood and platelets.  I'm also at that point that I should be avoiding crowds but it's Halloween.  I have collected quite the stash of candy from the hospital...perk to being here on Halloween.  I have to make a separate post for pictures because I don't want to throw my kindle through a wall when it loses everything again.

Spam

     So I received a comment from someone I didn't recognize...Emily Walsh.  Her comment seemed pretty generic so I threw the comment in the search bar of google and discovered I am not the only one who has received her request.  Benefit of the doubt...maybe she is a person who has legit questions regarding cancer or treatments.  I look a little further and she is hitting up all kinds of blogs...not just people with cancer.  This is what happens when you make things public.  A lot of the other blogs I found responded to her.  I wonder what kind of information some hacker got using that tactic.  You can't trust anyone nowadays.  Emily Walsh, you can go scam someone else because I'm not biting!

     It's Monday, my bones are uncomfortable and my mouth feels weird.  That's all I got!

The weather is fine

     This is my favorite time of year.  It is so nice outside!  We went to Busch Gardens today.  By the time we left it was just enough walking around for one day (after treatment...usually I could do more).  I got to see and chat up some missed faces.  We spent a decent amount of time in my area, visiting the critters.  We have 2 new skunks at jambo and some sloths.  I said hello to Harry.  Kamali, the bald eagle, has a full white head now.  We saw the tiger cubs out playing.  There was, of course a bunch of people crowding the window...mostly kids.  I was very surprised that the only person pounding on the glass like an idiot was an adult male.  Seems he could learn a thing or two from the kids...observe quietly!

     Friday and Saturday were a crap shoot.  I felt pretty tired after Thursdays treatment.  They actually decreased the dose of all of my drugs in an attempt to get me back on every two weeks.  The doc said the point of this treatment plan is frequency and going so long in between treatments isn't part of the plan.  He thinks that because I have one kidney, the areas of concern are getting enough exposure and reducing the amount to bring me back on schedule will not lessen the effectiveness of treatment.  So I may be done before the end of the year, but still not soon enough to get home for the holidays or back to work this year.

    Only 4 more to go!

  

Us

     Back again.  My appointments started at 10:45am today.  I arrived 10 minutes early just to find out they are an hour behind.  I was directed to the conference room to enjoy a danish and coffee.  I ended up in conversation with one of the volunteers.  It was the normal conversation...what do you have, my husband had this and then we end up on animals.  It was the perfect length because when I got back to blood draw they called my name within a few minutes.  The tech asked if I wanted her to access my port...I held back my laugh so it didn't go right in her face.  By the small chance I do not get chemo today, I would have to wait again to be de-accessed which I thought took forever on Tuesday (so today it would take forever plus one hour).  No thank you!  They are always behind but generally never tell you.  You know it's bad when they are admitting it.

     Since they are behind, everything else gets pushed back.  The specific number my doctor needs takes an hour to get.  I decided to make some cranes before checking in since I know I'll have a wait.  It seemed like I wasted the perfect amount of time again because I got called back right away.  They took my vitals and put me in a room and now I'm waiting. The nurse popped in to say I am 5 points under what they would like me to be at but we are going ahead with treatment and will keep a close eye on me this next week.  Not sure how I feel about that but we will discuss it as soon as the doctor comes in.  I'm next-ish.

     Oh I also got a hat.  People knit hats for the bald people and leave them on tables or in baskets.  I saw one in particular that I thought was pretty...one of my favourite colour combinations.

     Ok turns out it was just my platelets that were 5 points lower than they like.  That is less of a big deal than wbc.  It is 6:30 and I have about an hour and a half left.  Infusion center was an hour and a half behind.  It's been a bad day for the hospital.  I watched the last Freddy Krueger movie while sitting in the chair.  It is the one with his daughter.  He exploded at the end so it should be the last.  Although, I don't know when Freddy vs Jason came out.  Maybe that was last.

     Jeremy is bringing me dinner :)  I appreciate that they have food here for us as part of treatment but a piece of lunch meat on a roll with some mustard just doesn't cut it for me.

     A big Happy Birthday to my mom today.  Wish I could be there to celebrate.  

happy birthday to Randi too of course.

Lame

     Last week when I wasn't able to get treatment because of counts, I wasn't surprised.  Today, I was 12 points shy of getting treatment.  Grr!  We are rescheduling for this Thursday.  My plan is to not have my port accessed during labs.  It seems every time I do my counts are too low and treatment gets pushed.  It's a jinx.  So now I'm back downstairs waiting in line to have my port de-accessed.  I got here at 12:45, had 2 appointments (1 and 1:45).  It is now 3 and I can't leave until this thing is removed from my chest.  I asked if I could just keep it in but Cathy said no.   So that's my day so far.

     Earlier today I went to the gym to take a body flow class (combo tai chi, yoga and Pilates).  What I ended up taking was called body attack!  Two very different classes.  I kept up though.  I chose the lower intensity options most of the time but it's better than nothing. Maybe I can get to body flow tomorrow.  The instructor injured herself this morning so we shall see if tomorrow is cancelled as well.

Been a good week so far

     I went to drag queen bingo on Wednesday night with some friends from work.  It's always nice to get out and hang with friends but it is doubly nice when BINGO is involved.  I did not win anything :(.  It was kind of hard to understand her on the microphone because her voice kept cracking and we showed up late so we didn't quite know where to start.  They make the winners walk around the bar in the center of the restaurant and everyone throws their crumpled up bingo sheet at them.  I like that part.

    Thursday, J and I went to trivia at a local place with a friend.  Again, we did not win but I feel like we were close.  I had two questions right but I second guessed myself.  Well one the answer was Space Jam but all I could think about was Shazaam.

     Friday was a nothing day, but I did get a cook book in the mail (thank to my bonus mom!)  It has a bunch of recipes I am looking forward to trying.  I nailed it last week with the enchiladas but this week I just couldn't come up with anything cool to make.  I made chilli which was meh and spaghetti which Jeremy is not terribly fond of in the first place.

     Tonight we are meeting up with Brian and Tatiana to go to the grand opening of Green Bench.  There will be lots of tasty drinks, food trucks and music.  It's such a good location in St Pete too.  Can't wait!

     No chemo today.  My platelets are not cooperating.  I'll be good next week though.  My white count is at the point where I don't have to worry about fevers, so that's nice.  To me, that means I'm out of the woods for ending up in the ER but I still have to take the extra clean precautions.

     My hair has started growing in again.  Maybe it will stick this time.  Before it was because I had so much time in between treatments.  That is not the case this time so maybe it will continue to grow out.  Really I just want my eye brows and lashes back.  It's hard to be pretty without them.  I know what everyone is going to say but be honest with yourselves...if you were to accidentally shave off an eye brow like in the movies (I'm not sure how that could happen in real life so I refer to the movies) it looks weird and unnatural.    It is so much easier to pull off bald when you have eye hair.

     I find it funny my doc likes to say "you get another week off" when chemo gets pushed back.  In my mind, all of my weeks are off.  I need a short that says "I'd rather be getting chemo".

     On a side note...I would really like some nutella right now.

     I got to see my nephew Logan today.  I could not figure out how to make the webcam work on my computer, so we used our phones.  I blame Google but at least I got to see him and the family.  Everyone is doing well and looking great.  Miss them all very much.

    I did not do a whole lot today.  It is amazing and disturbing how much time can pass while being on a computer.  I checked my email, Facebook, a couple accounts, read a few articles and when I looked at the time it was 2pm.  Terrible!

     Hopefully tomorrow I will be getting treatment all day and will feel most productive.  

     The enchiladas turned out yummy.  Jeremy was so proud and impressed.  People at his work commented on the leftovers.  Go me.  Now I have to find something else to make.

     Having a great weekend so far.  Met up with Brian and Tatiana yesterday.  Haven't seen them in forever it feels like.  Enjoyed some very yummy wine.  Got this place in trivia Thursday.  Today, J and I saw Gravity.  Holy crap!  The emotional roller coaster was almost too much.

     Today, with the help of my brother Shawn and his wife Melissa, I add sweet baby Logan to my collection of nieces and nephews.  He shall be showered with all kinds of animal related gifts from Auntie M (that's his favourite aunt...he just doesn't know it yet).  I can't wait to meet him but it looks like I will have to.  Fingers crossed I am able to get treatment number 10 on Tuesday.

     So last week I was having lunch with friends and a gentleman comes up to the table thinking he knows me.  I'm gracious and explain I am not the same person and I do not know any of the names of our "mutual acquaintances".  He wished me well and left.  Today, in the grocery store, as I'm walking in some lady yells "didn't I see you at Carabas?".  There was no eye contact, I did not recognize the voice and so ignored it thinking she was talking to someone else.  Our paths cross thirty minutes later and with eye contact she asks again.  I say no, I've never been to that restaurant and continued with my shopping.  Another 10 minutes she is back and says "it was olive garden.  I pointed you out and my husband came over."  Ok now it makes sense...this is the crazy wife of the crazy guy who insisted that I participated in the Live strong program at the Y.  He must not have told her upon returning to his own table at the restaurant that I was not who they thought I was.  So I say I remember without bothering to explain that we are still strangers.  She says I look great, gives me a hug and leaves.  So weird.  Us hairless people must all look alike.  If only I had some stinking eye brows...

     Other than that the last few days have been good.  I'm making enchiladas for the first time tonight.  I do have to go back to the grocery store first though...forgot a few things :/.  might go to trivia tonight.  Maybe bed bath and beyond...

     

Done

     My last day. Treatment went fine.  I have to get some blood this morning but it shouldn't delay my discharge because the mesna has to run for 12 hours after chemo. 

     Doing really well.  Nothing seems to bother me.  My biggest challenge is staying occupied. 

Day 4 & 5

      Had a slightly better view today.  They're no hornbills but I'll take them.
     I finished my scrapbook.  Well I guess there is more I can do, I've just run out of pages.  Turned out nicely.  I'll probably add more pages.  I can't leave out an animal.  How could I possibly choose!  That will be for next week. 
     Today I have my Sunday paper and then a few pieces for arts and medicine.  I guess I'm kind of volunteering.  You can only paint so many pictures before they become forced and no longer fun or interesting.  So basically I'm going to paint pages that they can turn into cranes or something.  Also gonna cut out a crap ton of butterflies.

Day 3

Pretty much same as yesterday, except the nice old man who brings stuffed animals and candy stopped by.

I went dark chocolate to be healthy :)

day 2

     Spent most of the day watching the news about the shut down.  I find it mind blowing.  Let me preface by saying I am not political so I am sure I'm not getting all the facts as the media is usually one sided.  However, what I am seeing is pretty shitty.  Here comes a personal belief that has worked very well for me.  If you choose to always do the right thing in every situation, no one can hold it against you and you will have all the confidence you will ever need in life.  Sometimes the right thing isn't what you want or isn't right for someone else, so not every one will respect you for your choices, but if it's right for the situation it's what you should do.  That means no lying, cheating or stealing...It is not that hard.  Can you imagine what kind of world we would be living in if everyone did that...especially the people elected to watch out for us? If I sound righteous I don't apologize.  There is always a choice and only one person has the ultimate decision in the way they conduct themselves.  I would like to tell the world 'choose not to be a shitty person'.  Rant over.

     I recently came back to my room from Arts in Medicine.  They sent a basket of stuff for me to play with over the weekend.  I pulled my chair up to the window in my room to look through the basket, opened my blinds to enjoy the view...

     It's not the best view in the world but at least the sky is blue.


    I also checked with the docs...there is no way to start chemo earlier.  Looks like 2am all week, well for 4 more nights.  It feels like 2 weeks but you make the best of it.  I really have to talk to someone to figure out the system here so next time I'm set up with a more reasonable routine.  

I'm in

     So I call this morning to admitting and the lady says "I'm surprised they didn't get you in last night".  I don't know how to take that.  Did someone drop the ball yesterday? whatever...it's a new day.  The lady says she will call me as soon as she knows something. The earliest people get discharged is noon.  So I don't expect to hear anything until 3.  When 7pm rolls around I call, it goes to a message service where you can't leave a message and then I get hung up on.  30 minutes later I get a call.  She asks if I tried to call...yes I did.  So she saw I called and knew it was me.  Someone just got discharged and it will be an hour to an hour and a half before the room is ready.  I say ok (I'd be getting the room at 8:30).  It's not ideal but I don't want to lose the bed and have to wait for another discharge.  J and I waited until well after 9.  We go upstairs, get settled in, 3 people listen to my lungs and ask a bunch of questions.  The nurse starts accessing my port and ends up having someone come in to finish the job.  It did not go well.  After they finish at 11:30pm, they tell me chemo will start at 2am.  I'm usually pretty easy going but I'm pissed.  I would not have come in had I known this would be the outcome.  I ask why...the nurse says its the pharmacy.  I am so annoyed right now.  The lady in admitting said she made sure that they would be a able to start chemo tonight.  I guess she wasn't wrong.  So what this means is for the next 5 nights chemo starts at 2am.  It will end at 4, if my nurse is on top of her shit.  It's not her fault so I'm not talking it out on her but she can tell I'm upset.  This nurse is new to chemo and ports...the whole shabang.  She called pharmacy to ask what to do about my thiamine pill since I already took it this morning.  It's a vitamin!

     I'm angry.  This post is not going to get any better and I'm probably bringing some people down so I'm just going to stop.  It's certainly not helping me or my attitude.

Great weekend

     Saturday was a great day.  Lots of good friends and drinks.  We started out at Southern.  I have to give a shout out to my brother-in-laws rhubarb mead.  It was my favorite one of all of the drinks we tried.  Have to go back before it runs out.  Then it was off to the much anticipated Green Bench.  It absolutely lived up to my expectations.  The wheat was my favorite beer.  Beverages aside, the place is really well put together.  Every aspect was given serious thought and it shows.  The tables, chairs, lighting, decor...if you are visiting Florida, it's a must.  After a few hours we walked to this tiny little box of a place, ordered what turned out to be some delicious cuban food which we took back to Green Bench and enjoyed with another beer.  We hit up cycle brewing before heading home.  I was less impressed with everything.  The beer I had was way too sweet.  It gets the title of my least favorite pumpkin beer of the year (might be my only pumpkin beer of the year though).  Sunday, we had a nice breakfast with more good friends before Shelley had to take off for home.  It still resonates with me that she drove 7 hours after work on Friday (got in about 11pm) and 7 hours Sunday just to spend Saturday with us.  I feel very loved.

    We also had a surprise this weekend...we got to hang out with a kangaroo for a quick minute.  It made me miss work but I was more than happy to hold the little fella.  Who doesn't love a little Joey love!

     I went in this morning for labs.  All my numbers are on board so now I'm just waiting for a bed.  My nurse said they were full but to still go down to admitting.  I go down there and say "I know you guys probably won't get me in today.  I just want to make sure you have me on the list."  The lady behind the desk replies, "We can probably get you in today, what's your name?".  It's like the hand doesn't know what the foot is doing.  Maybe I got that analogy wrong but I have come to expect this.  In fact, I am prepared to not get admitted until Thursday because that has happened before.  My bag is ready in the car so I am ready whenever.  The only thing that would make me mad is getting a call at 8pm or later to come in.  I did not like my treatment starting at midnight, which is what happened last time.  That is not ok with me.  Honestly though, what would be my option? Say no and possibly lose that bed and not know when the next bed would be available.  That would not get me in and out faster.  So I am at their mercy...not a good place to be.