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Cycle 4 starts today and bloodwork is good enough to proceed without the Zarxio, which is a HUGE relief.  Week 1 is tough enough without that being added.  So, this is my attempt (for my own memory) to log more "little" details.  I work hard to show a legitimate "brave" face, but fact is this sucks.  It's no vacation and if I have to do it again, I want to be less surprised by some things.  

My mind continues to be strong and secure, but I have weaker days.  The first week of each cycle is always rougher.

Nurses - For starters, they are extraordinary!!  I've gotten to interact with most and each is different and each is amazing.  As the day goes on, I watch what they do take a toll on them, but NEVER is it reflected in their service or attitude, just some stray hairs and some longer breaths.  But they are constantly and completely engaged, attentive to the fact they're poisoning us, empathetic, kind, upbeat, smiling, NICE, friendly... and they do it ALL DAY, EVERY DAY!  I've never seen one waiver in the least, maybe just a few more stray hairs.  I can't imagine a better place to be than with these 12 extraordinary humans.

Port - Met with NP Jennifer this week and learned the port is planned to stay for at least a year after my finale...just in case it's needed again.  I'm good with that, but seems like that would be normal to share earlier?  Shame on me (again) for not asking when the stupid thing was put in.  Anyway, guess it's place of honor as part of my totem will have to wait :)

MONDAY JAN 25 (Day1 of Cycle4)

Here goes.  Last Cisplatin today. 

During infusion:

• Schedule - So far, schedule stays the same each cycle.  The biggest variant is when I have to add the Zarxio.  It's been added during week 1 and week 2 in the past, so I'm betting I'll get it next week.        
• Cold - I get increasingly cold during the actual infusion and am grateful for my blanket, jacket & heated recliner.
• Shakes - the shakes start hitting after the Cisplatin has started.  Weird to almost feel the poison working it's way through my body.  Nothing hurts, I just sit there visualizing the poison killing things along the way :)
• John Porter - Finally got to meet and visit with a lovely man I've watched many times from afar.  "Quiet Dignity" is the first way I think of him.  He is older than me (turns out he's 71), dressed impeccably, including a fedora.  Attractive, thin, very proud posture, polite, soft-spoken.  Today I got to visit with him very shortly and he is all those things and more!  His last day is Feb 8 and I hope our paths cross again before then.
• Youth Minister - Tried to visit (difficult 15-20' away!) with a man I've also seen during these weeks.  He is a youth minister with colon cancer.  Has had about 1/2 his colon removed and anticipates there may need to be more.  Just too hard to talk so far away.  We did get to lament about Zofran (one of the at-home nausea meds I've avoided) and he says the constipation was instant!  Said he could still have a BM but it was difficult.  He was shocked I won't take it and I laughed and told him I run backwards from constipation.  The nighttime olanzipine provides enough difficulty, thank you very much!
• Food - Food is still easy - leftover Macaroni Grill was great at chemo
• Night - Took 1/2 (5mg) Olanzapine and 2.5mg Melatonin
• HR never dropped below 72, so no good sleep
• Awake about 2a-5a
• Hiccups increasing, then hiccup/burps that could turn into throw up, but didn't
• Baaaaad indigestion.  Rolaids helps a little, but I wish for more.
• Queasy 
• Sleeping on my side seems to be the only good way.  If I roll too much to back or tummy, my tummy says no!

ADHESIVE - Starting to have bad reaction to the "regular" adhesive.  It was only on for about an hour, then replaced with hypoallergenic at infusion, but my skin is definitely reacting :(

TUESDAY JAN 26 (Day2)

• Shakes are really prominent.  Feels like everything inside me is vibrating.
• Brain is very fuzzy.  Bright lights are really hard to be around.
• Tired. Tired. Tired.  
• Nausea - Food isn't looking so appealing today, but no problem eating, but nothing really sounds good.  No throwing up. 
• Other side effects:
• Taste - not only does some food taste wrong, but my mouth/tongue constantly feel dirty, thick even immediately after brushing my teeth.  Sucks, but water tastes the worst and I'm supposed to be hydrating a LOT to protect my kidney.
• Shower - just like my teeth.  Feels like I always need a shower.
• Ear ringing - a constant high-pitched whine.  As my HR increases, the whine pulses in time with my heart beat.
• BM - Not constipated, but NOT normal.  BM is much smaller than normal and not as full as should be.  I could really use a good poo.
• Bloated - seems like all the fluids are just staying put!  It gets better, but I forget how bloated I am, especially these first 10days or so of each cycle.
• Headache - Headache increasing and Tylenol still working, but I can't get behind on it.
• Lights - Bright light really hurts.  Hurts my eyes.  Adds to the headache and even throws me more off balance.
• 
  
• Work - Clicked a lot actually just had to do one at a time!  Had to actually ask Sonia to stop talking.  Too much detail at once feels harder than drinking from a fire hose.  Totally emptied my gas tank in just this one day.

• Night - Took 1/2 (5mg) Olanzapine and 2.5mg Melatonin
• HR never dropped below 72, so no good sleep
• Awake about 2a-5a
• Hiccups increasing, then hiccup/burps that could turn into throw up, but didn't
• Baaaaad indigestion.  Rolaids helps a little, but I wish for more.
• Queasy 
• Sleeping on my side seems to be the only good way.  If I roll too much to back or tummy, my tummy says no!

WEDNESDAY JAN 27 (Day3)

• Bad morning.  Called in sick to get couple extra hours sleep.  I'm OK laying still, but sitting up and starting to move feels like I have to learn to stand/walk each time.  crazy!
• Shakes.  Headache.  Nausea.  
• Almost wish I WOULD throw up, maybe better out than in???  
• Nausea meds at home - Still refusing to take these.  Pharmacist had to OK reducing my nighttime Olanzapine during 1st cycle because it made me feel worse than nothing at all!  Talk about sick!  And the other 3 drugs come with their own side effects with constipation guaranteed.  No thank you!
• Fun! - OK, so these nurses (and I've had most of them) are extraordinarily amazing!!!  I watch them throughout the day and the toll "shows" but never in their service or attitude.  So today, I wanted to share a very small thank you and I brought them salads from La Madeleine and bundtinis for dessert.  What I intended to be a thank you FROM ME became much more.  They shared the sweetest card with me and EVERY nurse took the time to write a full note.  I had to put it down when I first saw it because it overwhelmed me so.  Each one of them is so very special.
• Chemo - Ok all proceeded as normal.  Taylor got me in and got me out.
• Christy - So Christy started chemo yesterday and raved about the nurses.  I assured her what she sees today is exactly what she'll see for her next 12 weeks.  This is her 2nd go with chemo.   Last time was 10yrs ago and says the port hurt, so she was trying just IV each time.  Today her IV jumped out of the vein, so after multiple pokes to get her chemo going, she's requesting a port.  Today she's here for stage 4 lung cancer and tumors in her brain.  Already post-op what they can and she knows her years may be shorter, but she's sparky and spunky and I'm thinking a bit of a bad-ass without her chemo drip.  She and hubby are lifelong fans of FWSSR, ready for us to open again and he shops Cabela's while she's here... so we're both big fans of outside.  I really hope she'll be ok.

         LOL, Christy shared I need to plan on longer airport screenings, which I hadn't thought of!  Just         

         learned this week the port will stay at least a year, so "passing" those screenings is on my list for 

         Doc Dean.  She laughed lots about her spinal hardware and her veteran husband's prosthetic leg.  

         Stories had us both rolling!

• Doubts - As my 4th cycle starts, it means my finish is coming!  I've wanted this for what seems like forever and now that it's here, it feels like such a short time.  Seems I just started.  Doubts are creeping in for the first time.  I was never incapacitated.  Should I have been incapacitated?  Did we do strong enough?  Did we go long enough?  Did we choose the right protocol?  Will I actually get my life back?  

• HR never dropped below 72, so no good sleep
• Awake about 2a-5a
• Hiccups increasing, then hiccup/burps that could turn into throw up, but didn't
• Baaaaad indigestion.  Rolaids helps a little, but I wish for more.
• Queasy 
• Sleeping on my side seems to be the only good way.  If I roll too much to back or tummy, my tummy says no!

THURSDAY JAN 28 (Day4)

No chemo today, so really hoped to work like crazy.  More like work a bit, then collapse, which pisses me off.  Staff meeting I actually had to excuse from my part of the meeting because I felt like I would collapse and then I could barely stop crying to finish the meeting ARGH!!!  Tried to lay down, but work calls kept coming, so I stayed hooked til about 4:45p

Side effects are all still the same and I can NOT get warm:

• Really flushed today.  Hopefully the steroid is working it's way out.
• Shakes are really prominent.  Feels like everything inside me is vibrating.
• Brain is very fuzzy.  Stuttering is VERY awkward.
• Tired. Tired. Tired.  
• Nausea - Food isn't looking so appealing today, but no problem eating, but nothing really sounds good.  No throwing up.
• Taste - not only does some food taste wrong, but my mouth/tongue constantly feel dirty, thick even immediately after brushing my teeth.  Sucks, but water tastes the worst and I'm supposed to be hydrating a LOT to protect my kidney.
• Shower - just like my teeth.  Feels like I always need a shower.
• Ear ringing - a constant high-pitched whine.  As my HR increases, the whine pulses in time with my heart beat.
• BM - Not constipated, but NOT normal.  BM is much smaller than normal and not as full as should be.  I could really use a good poo.
• Bloated - seems like all the fluids are just staying put!  It gets better, but I forget how bloated I am, especially these first 10days or so of each cycle.  OMG I'm miserable!
• Headache - Headache increasing and Tylenol still working, but I can't get behind on it.
• Lights - Bright light really hurts.  Hurts my eyes.  Adds to the headache and even throws me more off balance.
• Baaaad indigestion is painful.   Rolaids help but it just keeps coming.  

I know I should go for a walk, but it's about 48degrees, sunny and both those sound icky.  I think this may be another early-to-bed night.

Experimented with Dan's stash tonight and realized I haven't rolled a joint in foreeeever and it showed.   Complete klutz.  Took 2 hits and  went to bed.  Coincidental?  My HR shows I finally got about 2hrs deep sleep last night and that's a first in weeeeeks!

FRIDAY JAN 29 (Day 5)

Finally got a nurse I don't want again... Tiwa.  Not only did she seem frazzled and hurried (with just 2 patients), but she ignored my torn, "burned" skin and unlike the others who tried to avoid that area, she plopped the dressing adhesive right on top, even after I pointed it out and said I hoped she could avoid it somewhat.  Then when it was time to remove, she RIPPED IT OFF!  I actually doubled over in tears (and I'm not a complete wuss) before she could finish and she even said "better to remove it quickly."  WTF?!?!  I told her not when there's already no skin!!!  

This was Friday. morning when I remembered to take a pic.  

Basically went home and went to bed.  Took another 2 hits again tonight and HR said I got almost 5 hours of deep sleep!!!!  Haven't seen that at all during chemo!!!

SATURDAY AND SUNDAY

I was a waste.  Saturday had a great talk with Charlie Adams and in my efforts to get him some spark I shared my bike computer with him.  OY!  Dismal, but at least I finally got on the trainer.  Took almost an hour of starting/stopping to get 31 minutes of riding, but I got it and grateful to get off for good.  Lordy... an exercise load of 24... nowhere to go but up :)

After a nap and too much TV, I added a walk this evening too.  Same result.  Took forever but I know I needed to be outside.  Roughly 20minute miles, which actually kinda shocked me.  My slowest have been 23minute miles, so today was a nice surprise.  Guess all of me needed to be outside!

Sunday stayed in bed all day and Dan brought over Whataburger for dinner :). He insisted on dinner and I couldn't think of anything I haven't eaten or that I wasn't tired of and that burger went down grrrreat!

MONDAY FEB 1 (Day 8)

Ok, here goes.  Last Gemcitibine today.