Hair today, gone tomorrow!

This new ICE chemo regimen has sure kicked the crap out of this hair of mine that I've grown so fond of over the last few months.  I can only hope it's doing the same thing to these stubborn cancer cells!

Since my last blog entry on Thursday  my hair has taken a dramatic turn towards being non-existent yet again.  I've woken up to piles of hair on my pillow and it's just falling out in chunks now which is oh so exciting!  Even though I've been through this whole hair loss business before with the ABVD, things were different this time around.

We had a busy Saturday that included a trip to Costco, taking the girls (our kitties) to their annual vet appointment followed by moving my brother to a new apartment and celebrating all the April birthdays in the evening with my family.  When we got home I took my wig off and realized the hair in the back of my head had rubbed off (yes, rubbed off) leaving me with bald spots.  Now what exactly is a person to do when they've got lots of hair left on the top of their head and bald spots in back?  Take a scissors and cut the rest of the hair off of course! 

For the second time since this journey started it was time for me to stop this anxiety train in its tracks and take control of the situation.  I'm sure I could have just left this mess until this week when I'd be able to get into DK International for another shave job, but I decided right then (at 10:30 pm) that I wasn't going to put up with this for one more second.  It was time for this hair to go!  The second I started cutting the anxiety disappeared and I felt good about this split second decision I made.  I couldn't wait to get this hair as short as possible, and even got the assistance of the hubby to cut the hairs in the back that I couldn't see myself.  It was a team effort!  In fact, Josh's hair was starting to get long so he decided to take care of that today and now we're both back to being baldies. 

Here's the result of my hair cutting extravaganza.  You can definitely tell where the hair has been cut and where it has just simply fallen out (lame).  It's not pretty, but either is cancer.  Here's to hoping this is the last time I have to ask someone to shave my head or take matters into my own hands regarding my hair because it's sure getting old.  I miss my mohawk already! =)

I think my plan of attack for this evening will be to stop at Target and buy a nice electric clipper set so I can clean up what I've started, but also for Josh's hair if he decides to keep it short.  Call me cheap, but he spent $18 today to have his head shaved which seems like such a rip off to me!   If they were doing something a little more challenging than shaving his head I'd say $18 is a good deal.  I think we'll keep that extra $18 in our pockets thank you very much!!

Back to Hubert Humphrey and North Memorial this week for "ICE" and neulasta - round 2.  Wish me luck, and also please pray that this new chemo is making good progress on killing off the last of the active cancer cells so that I can move onto the next phase of treatment being the stem cell transplant.

This week's treatment schedule didn't go exactly as planned.   I showed up to my outpatient appointment on Tuesday to receive the "E" portion of ICE chemo (Etoposide) and my counts were low...go figure.  We're used to my white blood count being low, but this time my red blood and platelet counts were also low.  Thank goodness for the neulasta shot because all of my counts probably would have been much lower otherwise. 

We figured being that we already had the hospital appointment all booked out that Dr. Londer would let me sneak on by and get treatment anyway.  Wrong.  He checked with the 2 pharmacists that were on hand and they all agreed that it'd be safer to wait another week, especially since my platelet count was low.  If I were to get a cut, fall down, or any other activity that could cause me to bleed, it could be a little more difficult to stop.  I've never been known to be very graceful, but I have been known to trip up the stairs and talented enough to trip myself so maybe it's better this way.   

I try to maintain this thing called a life, but it gets difficult when treatments get pushed out.  The way things are going to fall now, tuesday's outpatient appointment will land on Josh's birthday (4/24), and then I'll be admitted into the hospital on Wednesday, which is also my parents wedding anniversary.  I'll be at the hospital until Thursday, have the neulasta shot on Friday, and then Saturday is my nephew's birthday party, which I will more than likely be missing if I feel anything like I did the last round.  It's one of those situations where you just do what you've gotta do.  It just stinks. 

You know what else stinks?  My hair is starting to fall out again.  I was just starting to get used to this new hair of mine.  I'm able to actually brush it, put my fingers through it, and even style it into a mohawk for fun (see pictures below).  Unfortunately the last couple nights when I've put my fingers through my hair, I end up with hairs on my hands or shoulders, or both.  I've also noticed it on my pillow and bath towel after a shower.  I could tell something was going to happen because my scalp started getting extremely tender to the touch again.  I remember this feeling all too well.  As if losing my hair wasn't tough enough the first time...

I could be getting completely ahead of myself and my hair could just be thinning out.  I know what to expect now (unfortunately), and it won't be traumatic if it falls out necessarily - just disappointing.  I know it'll grow back just like it has been doing.  I was just hoping it'd be long enough by this summer for all the fun weddings we have on the calendar.  I guess only time will tell.  At least I've got a couple really great wigs I can continue to rock until my real hair decides to stick around for good. 

It has been a while since my last post, and I figured it was time.  I would have posted on Friday but my head was pounding, and nothing is worse than staring at a bright computer screen when you have a migraine.  Going to sleep seemed like a better solution!

After last weekend I have to tell you, it felt great going back to work on Tuesday.  I worked the rest of the week in the office, and my mood got better and better each day I was there.  I felt almost energized.  It was a change of environment, and my co-workers and email gave me something to focus on other than this stupid cancer.  I've realized I seem to be at my worse when I'm stuck indoors too long.  It seems like such a simple realization, but I usually have no issues laying around doing a whole lot of nothing.  This is different though.  I'm laying around because I feel crummy or just have no energy due to chemo drugs.  It's just a reminder that I'm still in this fight with the "big C" and it makes me mad.  I mope around while the smallest violin plays me a little tune.  All I'm missing is cheese and wine!

The chemo fun will start up again this week beginning on Tuesday with my outpatient visit to Hubert Humphrey where they'll administer the Etoposide.  As much as I dislike these appointments it's always nice to visit with the employees.  They know me by name and are just the sweetest people.  This place used to really make me nervous in the beginning, but now I consider it my place for healing and getting better.  We have the same goal and that's to kill the cancer.   Wednesday morning I'll check into North Memorial and will be released sometime in the afternoon on Thursday.  Friday is when the real fun begins and I get the neulasta shot.  Once I get that, it's pretty much nighty night until Sunday when I should start coming out of my fog.

We had big plans this weekend that involved driving to Madison Wisconsin to see my cousin Will beatbox at a UW Madhatters concert.  Before I started up with the new ICE chemo I was nervous that it'd interfere with me being able to attend.  It all worked out though!  Yesterday the parents picked me up (Josh stayed home sick) and off we went to Madison.  It was fun to have all the family together and to be able to support Will.  Plus, being that Josh was working through a bad cold it was a good reason for me to get out of the house so I didn't catch his funk.  Once I got home this afternoon I took the lysol wipes and wiped anything and everything down and washed the bedding.  Hopefully it's enough to keep me healthy.  I guess only time will tell.

Here's a little video of Will doing his thing at the concert last night.  He's pretty great if you ask me :)

Yesterday was the first day since Friday that I haven't felt completely "out of it".  I got my nuelasta shot on Friday afternoon at Hubert Humphrey, and lets just say it kicked me square in the back side.  My initial concern with the shot was the potential of it causing muscle, joint and bone pain.  Thankfully I haven't run into any of these issues.  Instead, I battled extreme exhaustion all weekend long.  I got 11 + hours of sleep both Friday and Saturday night, woke up just long enough to get some food and fluids into my body, and then went straight back to bed to log another 3-4 hours of sleep.  I just could not get enough!

I've had these grand plans of blogging about my hospital experience, but every time I'd sit down to start typing, a wave of exhaustion would come over me, and I'd feel the need to lay down due to feeling light-headed or even dizzy.  Even checking my email was a chore unless I did it on my cell phone from the bed.  Needless to say, nothing got accomplished this weekend, and poor Josh had to deal with me sleeping the Easter weekend away, or acting like a zombie when I was awake.  I know I just started this new form of chemo along with the nuelasta shots, but I'm already sick of it!

Before I forget I want to show you what my last PET scan looked like.  As you can see, I still have a ways to go.  The spots are pretty hard to miss, aren't they?  Why won't this cancer just GO AWAY?!  It's discouraging when previous scans show literally no signs of active cells, and then you go 3 weeks without chemo, and bam!  There it is staring you in the face.  Things aren't supposed to work out this way.  In an ideal world, a person should get their chemotherapy, and then be done with this nonsense, and be able to move on with their life.  Actually...scratch that!  In an ideal world, people wouldn't get cancer.  PERIOD!

Sure, I have my good days when I'm upbeat and positive, but I'd definitely be lying to say I'm not also Debbie Downer on more occasions than I'll ever admit.  Nothing about this cancer journey is easy, but I'm doing the best I can.  I'm in survival mode.  If crying into my pillow at night keeps me from having a melt down at work, then so be it.  If being hospitalized and getting shots in my gut brings me one step closer to winning this battle, then so be it.  I've said it before and I'll say it again.  I'll do whatever it takes!  I just want my life back. 

Whatever it takes!

Tomorrow is a new day, and the start of a new treatment plan.  Josh and I will be heading back to Hubert Humphrey in the morning so that I can start a new form of chemo - "ICE" which stands for 3 different drugs: Ifosfamide, Carboplatin and Etoposide.  Tomorrow I will only get the Etoposide, and will be at Hubert Humphrey for an hour to hour 1/2.  After that I'm free to go home and rest up.  On Wednesday morning I will be admitted into North Memorial hospital overnight in order to receive the Ifosfamide which is a 24-hour drip via IV.  The Carboplatin will also be given while I'm in the hospital.  Nurse Kate thought I'd be released Thursday afternoon/evening time frame.  If all goes well I should be able to go into work on Friday. 

The plan right now is to get the ICE chemotherapy a couple times so after this round we'll wait a couple weeks and do it over again.  In between treatments, Dr. Londer has mentioned giving me a Neulasta shot which helps the bone marrow produce white blood cells which helps the body fight infection.  I'm nervous about this as I've heard from others who have had the pleasure of receiving this drug that it can cause a lot of pain throughout the body especially in the muscles, joints, and bones.  Yippee! ... Not!  I just read something online about over-the-counter Claritin working for the pain due to the Neulasta shot, so I'll have to keep that one in mind if/when the time comes around.  Interesting!

Between the first and second round of treatment, I will be heading to the U again to chat with Dr. McClune regarding the logistics of the stem cell transplant.  I guess what they'd like to do is get me through 2 rounds of ICE chemotherapy, do another PET scan, and depending on how much the cancer has melted or shrunk down will depend on if I get one more round of ICE, or if we go into the transplant in which I'll be out of commission for 2-3 weeks hanging out in a sterile/quarantined room away from the germs of the outside world.  Just call me Bubble Girl!

One thing at a time though...

The next few days will be a new experience for sure, and I'm hoping I'll be able to handle this new form of chemo just as well if not better than the ABVD.  I feel good about this new plan that's in place, and I keep trusting in the Lord and his plan for me.   I've taken my hands off the wheel, and it's now time to let Him steer me the rest of the way.  I'm anxious, but at the same time I'm excited to get the show on the road.  It's time to show the big "C" who's boss because I'm not about to back down.  I'm going to do whatever it takes.