No Bucket List Needed

Today is one of those days were I just feel like blah.  If I am going to be truthful I would say I'm going on day four of blah.  It is hard to put my finger on what is making me feel this way and that in and of itself is beyond frustrating.  Although I am not in the "deep dark place" that Scott always refers to, I just feel sad, and for me that is abnormal. 

If you are friends with me on Facebook or follow me on Instagram then you know we took off Saturday and went to the beach.  Scott had a work event up there and I needed a break.  The kids got to get crazy in the hotel pool and spa while I sat outside and watched them.  It wasn't a busy hotel so for the most part we got the pool to ourselves.  However one couple sat down and chatted with me for a good amount of time.  I look like I have cancer with my bald head, spotty eyelashes and eyebrows, and after this last round some random burning on my face so the wife asked me a lot about my "condition".  One of the questions she asked me was if I started a bucket list of things to do and see as soon as I heard the word cancer.  Over the last two weeks this is the third time someone has asked me that.  I think it is part of the reason that I am in this funk.  

Hearing the word cancer stops your heart and when it starts back up again it feels like your running a marathon.  There were dozens of images flashing through my mind after hearing those words but the only thing that ever mattered was my family.  There was never a thought to creating a bucket list of places to go and see because all I could think about was the moments I would miss out on during Scott and our children's lives if the diagnosis was terminal. 

There was a time in my life where my dreams were bigger than the sky but things change as you get older, get married and have children.  Cancer is a mutation of your genes and I think that this is what happened to my dreams too.  They became less grandiose, dare I even say simpler.  I long to see my children grow up.  Each milestone I want to be at: 8th grade graduation, high school graduation, college graduation, weddings, births.  But so much more than just those.  I want to hear about finding a cool rock on the playground, having a loose tooth, and how someone spilled a drink during lunch.  I want to be there for it all.  Plus I want to be next to Scott at our 13th anniversary (next year) and our 25th.  That is my bucket list.  

This past week my kids, Scotty and I have been at each others throats.  No one has been happy and the smallest little thing has set off the kids.  There was way too much unhappiness, yelling, and name calling (between the kids).  As much as I hate that, and I do, it makes me so glad that I am here to be in the middle of it.  Life is not all sunshine and roses, it is messy.  There are so many moments that hurt your heart but there are so many more occasions that make your heart burst with happiness.  Those moments, good and bad, are what I live for.

Our little one day trip to the coast was a much needed reset for my family.  As I sat on the deck of the pool watching my kids play I felt so content as their laughter rolled over me.  It is the simplest thing that sometimes have the biggest impact, like asking someone with cancer about a bucket list.  I am limited in what I can do and because of that I am spending an obscene amount of time on the sidelines of life but it will be worth it when I am better. 

The kids wanted Chinese food so we got an Uber to get take out...first time doing that without Scott.  The kids were certain we were going to get killed because they saw on the news that an Uber driver killed someone...omg it was an adventure.

Me trying hard to hide my appreciation of Brody's manners while he enjoyed the free smores bar the hotel had by the pool.

Snuggled up and watched The Blind Side before bedtime.  Before we headed home we stopped at the Aquarium.  There were to many people there so I spent most of the time sitting outside of the exhibits on benches or even outside looking at the ocean but the kids loved it.  

Every time I asked them to take a picture they would hug each other.  I think the mini vacation was worth it!

Quarantined after Chemosabe 6

Over the past month all I have cared about was my platelet counts.  Were they going to be too low?  What could I do to help them get higher?  Even my last post was about how elated I was that my number was high enough because that meant no fear of needing to postpone chemo again.  But in typical cancer style one thing gets better and something else suddenly gets worse. 

My nurse yesterday was Kathy.  Chemo medicine is not mixed until about an hour or so before your appointment.  Every infusion you get a call to confirm who your nurse will be, if  your blood work has been given the good ahead, and to make sure you are still planning to be there.  When Kathy called she asked if I was the type of patient that looked at her blood work.  This was Kathy and my first time together so she doesn't know that I am a medicine journal junky at this point and should really go back to school to become a nurse.  So I replied yes...duh.  To which she responded then I  had to have noticed how low my neutrophils were.  Which I had but no one had ever been concerned about them, sooooo, I hadn't been concerned about them.  

Neutrophils are white blood cells and they do most of the fighting off of germs.  They are our internal army.  We want our army to be strong.  In order for them to be strong they need to have had time to mature, learn to fight, get educated on how to be effective.  Right now I have two things going wrong.  First, I have very low neutrophils which means what warriors are in my blood are few in number.  Second, the warriors still in my blood are babies and not ready to fight much of anything.  For chemo to be considered safe patients area allowed to receive treatment in an unhealthy range.  Typically this is no lower than 1.5 or 1,500.  In a healthy person they would be double or triple that number.  I am at 1.3 or 1,300 before I went in for chemo yesterday.

Kathy explained that my Oncologist had approved me for chemo yesterday even though it was out of range by a significant amount and she wanted to talk to me about this when I came in for my infusions.   At this point I was still feeling confident that I would be fine.  So off Scotty and I went to get my drugs.  But these nurses are no joke.  When I say they care about their patients, they really care about us.  Kathy went full mama bear and by they time she was done explaining why this was so serious I felt a little sick to my stomach.  Scott was texting my mom the entire time so basically I am going to be put back into the bubble.

Essentially what was explained, in great detail, was that it probably wasn't the best decision to have chemo yesterday.  Starting at 1.3, and that is when I am at my healthiest point since the last treatment, and prior to that chemo I was at a 1.5 (meaning my body is not recovering but becoming more and more worn down and weak) shows that my body is on a downward trend.  Most likely I will get below 1.0 or 0.9.  That level is pretty bad for scary infections or illnesses.  One of the reasons for this is that since my levels are so low the white blood cells don't have enough warriors to send out signals to my body to tell it that it is sick.  Think temperature, redness, puss, pain, etc.  By the time one of them is free to go send out the signal I will be really, really sick. 

So why did my ONC okay chemo right?  My guess is because it is the last one of the medicines that are killing off all of my cells.  After this one the next medicine doesn't kill off my cells in my bone marrow but targets specific HER2+ cancer cells.  Ultimately it will give my body the break it desperately needs to start regenerating its army.  I also think I might have been pushy about not wanting to postpone any more treatments.  It is demoralizing to know that my body can't seem to work harder to be ready in the three week time frame.  This might seem silly but statistically that is what most women are able to do.  I don't want to be special and need more time damn it!  Then I look at other patients that go every week or every other week and think gees their bodies can take it and be ready in half the time as mine!  What the hell!!!  It depresses me and makes me feel so weak.  My brother John told my mom when I had to postpone treatment an extra week for round 5 that I need to stop comparing myself to other patients.  Since my cancer was the most aggressive (highest graded tumors, HER2+, fastest growing) I am not getting a band-aid, I am getting an atomic bomb dropped into my body every three weeks.  It does help me mentally to think of it more like that...but still cancer strips you of so much more than just your physical health.

Next questions is what do I do to prevent myself from getting sick for the next 6 or more weeks (because that is the minimum amount of time Kathy says I should be cautious)?  Stay quarantined.  I call it the bubble which is what Scott and my parents have done from the beginning really.  Stay in doors, stay in my own home, don't use public bathrooms and if I have to bring bleach wipes and my own hand sanitizer, pretty much stay away from everyone and everything.  Sounds crazy but most people don't die from Cancer or AIDS, they die because they have no more white blood cells to fight of another illness they get because the initial disease has weakened their immune system so badly.  Always a nice reality check to hear as you are being pumped with said medicine....

As with every round Scotty was at my side.  He got lucky for this round and we were put into a large private room.  There was 3 large chairs and since we were alone Kathy told Scott he could move to the big chair.  Those are pretty comfy chairs and I was teasing Scott the entire time I gave him minutes before he was going to be asleep.  It took almost two hours because he was working but once I gave him the warm blanket they brought me (it was too much with the persistent hot flashes) he was out!

This man makes me smile so often and so big.  I love him so much and will be forever grateful for him.

Settled

Well, it has taken almost two weeks but Biedermann Crew is officially settled into our new home.  As of yesterday we have tv and internet which are the two most important "things" in a move I guess.  We have found that living without them does make you feel rather disconnected.  Compiled with the lack of technology and media is the frustrating realization that on the side of town we moved to AT&T has the worse cell service in all of the County.  This means my phone also has limited capabilities as well. To say it has been an interesting few weeks in our house is an understatement and that we are overjoyed to be reconnected.  (I will get a few pictures of the house up in another post)

To get up to speed I am doing good.  The second half of round 5 was better than the first half.  I was able to eat a little meat and found a sparkling water that tasted rather decent.  Having been able to eat a little more and keep more fluid in me made a huge difference.  Overall I had more energy and was able to sleep longer stretches of time because the stomach pain had lessened.

In an effort to conserve all my energy into only being focused on my body regenerating itself (if that is even possible) I didn't work out during this round.  It should seem easy enough to not do since the workouts are only about 30 min to an hour but damn it was hard!  I felt more tired than normal and attributed it to the lack of physical exercise.  It does not help that it makes me feel like a sloth too.

Yesterday I had my blood work drawn to see how the numbers look for ROUND 6.  If you don't remember my chemo regiment is 6 rounds of TCH followed by a year of just H.  The TC are the more toxic medicines; hair falls out, destroys the bone marrow, red and white blood cells die off, platelets disappear...it's a long and nasty list that I will be happy to be done with.

Thankfully when I checked my results my platelets were at 136!  That is still below the low range but it is high enough for Chemo today baby!!  I am telling myself that not working out did give my body more energy to stay strong.  No way was I postponing another week.  Not going to happen.  I have this all planned out and there is no way that anything is standing in my way.  I will kick cancers crap no matter how low my platelets get.  Mind you I will be a sight to see; bald, missing eyelashes, and bruised from head to toe.  But who cares, let's do this!