Round Four is Finito

Well, one more round of chemo is in the books.  I'm glad.  I will admit that this is round was more difficult physically, but it was also easier in the fact that Levi was home this week to take care of the kids, etc.  I didn't have to do anything but worry about sleeping and making sure I didn't get sick.  :)

They upped my chemo cocktail, so I'm not surprised that I had to take more anti-nausea meds.  Between the steroids, Zofran and Ativan, plus snacking, I was able to keep things in check fairly well.  Sort of.  Being nauseous is exhausting!

As I sit here, I'm hoping to gather enough energy today to shower, since I haven't done that since Tuesday.  Gross, I know, but when you've got tubing and an electrical pump connected to you, showering is a very difficult and time-consuming product.  You have to cover the port connection up, so it doesn't get wet.  You have to figure out how to hang up the pump so it doesn't get wet but it also gives you enough freedom to move around in the shower.  Then, the sheer energy it takes to shower can wear me out in moments.  I know this doesn't seem like a big deal, but if you are already worn out, taking a shower can be the end of you.  And, during the week of chemo - yes, showering sometimes feels like it's too much.

So, today's goal?  Shower.  LOL!  I will say that, with no hair, showering is a lot quicker.  Maybe Levi and I will get a decent lunch today.  We have a gift card to Olive Garden, and a good salad and a cup of soup sounds really delicious right now.  That is, if my shower doesn't completely wear me out.  :)

Update from yesterday

Sorry if this blog goes in circles, is repetitive, or doesn't make sense.  We'll blame the chemo pumping into me.  Mid-chemo blogging probably isn't the smarted thing, but I wanted to get it done.  So, please bear with me...

Day two of this round of chemo.  I've only been up for an hour, and I'm already tired.  *sigh*  I hate this, but I know it has to happen. Admittedly, it was easier this morning, since Levi is now home.  For those of you that don't know, he is searching for another job, here in the Phoenix area.  His last day with his now-former company was last week, and while it will put us back financially, it had to happen, for a lot of reasons.  Long story short, if you know of any job opportunities in the Phoenix area, please let me know.  The good news is that he's home now, and I don't have to worry about taking care of everything or coordinating with Mom and Dad to make sure they are here to help for basics.  That gives me the chance to sleep in, like I did this morning.  Huge difference.  But, we are now down to my income only, so any help is welcome and greatly appreciated.

All right, so the meeting with the dr yesterday went well.  My CEA is down again, down to 2.2, which is good news.  After some discussion, he has decided to schedule a CT scan for Tuesday, May 29th.  He is specifically looking at the areas in my lungs, and he doesn't want to depend on a single point of data (CEA) to know how my body and the cancer is reacting.  If there has been a decrease in size there, it will a) confirm that those spots are cancer, and b) will confirm that the chemo is working on all areas, including the lymph nodes in my abdomen.  It sounds like we are going to continue on to 6 round of chemo, then potentially scan (not sure what kind) after that to see where we stand and what the next steps are.  They have tested my original tumor from four years ago to get a more specific feel for what chemo will and won't work, so that has given them some additional tools to use in the future.  He specifically mentioned Erbitux as a maintenance drug; he seems to feel that it's much easier tolerated, but based on what I read, that remains to be seen.  :)

I think one of the things that we talked about at this appointment that we haven't really discussed previously is long-term goals.  I flat-out asked if I was in for a long-haul maintenance for the rest of my life, and he confirmed it.  So, as much as I'd like to believe that I'll one day be cured, I don't think that's a possibility.  Rather, I likened it yesterday to a long-term maintenance (similar to a diabetic), and the doctor seemed to agree. I don't like it, but I understand it.  Such is life, I suppose.  Well, such is MY life.

I did ask if we can go on and off a chemo, meaning can I start Folfiri again in the future if I've gone off of it at some time?  Yes, I can.  He's talking about a couple of different options, including pushing out the chemo treatments to every three weeks, rather than every two weeks (assuming the cancer stays in check), or shifting to Erbitux or Avastin as maintenance until the cancer shows it's ugly face again.  Then, we would go back to some version of chemo until we get it back under control again.  And, this will be my life, and how I keep on living.

But, I hold out hope that with all of the advances in cancer research, a cure is still in the cards.  Why not, right?  Hope....

The good news is that my numbers are continuing to go down, and the doctor seems to feel that's a good sign.  I think we are all happy to know that we'll have proof of that from the CT scan.  This will really help me feel like I'm on the right path, and making the right choices.

Chemo yesterday wasn't too bad.  I was able to stay awake enough to send a few emails and to complete a few tasks, then I was unconscious thanks to the Benadryl and Ativan.  :)  Got home, had dinner (my version: cheese and Wheat Thins), and was pretty tired.  Headed to bed after I set my alarm for 1am, per my nutritionist's orders.  She thinks that if I eat a midnight snack, it will help me stave off starvation and extreme nausea when I wake up in the morning.  And, you know what?  It worked!  I woke up tired, but not nauseous.  Thank goodness for smart people on my team.  :)

Right now, I've been up for about two hours, and I'm getting tired.  All I did was get breakfast and update this blog, and I'm pooped.  Knowing that I don't have to worry about the kids, dinner, etc. makes all the difference.  I'm not constantly looking at the calendar, wondering how many hours until I have to get the kids, be ready for dinner, etc.  We had a friend bring dinner last night (thanks Jill!), and another one bringing dinner tonight (thanks, Mary Beth).  I'm in the countdown to get this damn pump off.  Tomorrow.  Tomorrow, I keep telling myself.  That's all I need to make it to.

Another good piece of news came in this morning- an amazing friend paid for my tickets to go back to Syracuse, NY next month.  I'm so excited.  I can't wait to see my family and friends - I haven't been back in almost three years, and not since the re-diagnosis, so I'm excited to be able to see everything and to thank people in person.  It's going to be awesome - and, since I don't have any hair, I won't have to worry about my hair getting all crazy inn the humidity.  :)

All right - I'm crashing, so I'm going to log off.  Have a great day, my army!

Posting from Infusion/Chemo

Short post, as I'm starting to get sleepy.  Thank you, anti-nausea meds.

Well, I'm sitting in my chemo chair, getting the pre-meds.  Good news this morning - numbers are down again.  CEA is showing at 2.2, which is great.

Got a more definitive gameplan today - my doctor wants to see what's going on in my lungs (and to see if there is any change).  So, I'm scheduled for a CT scan next Friday.  Results the next week when I go in for chemo.  Hoping for good results.

That's about it.  Getting *so* tired, so logging off.  :)

Chemo Day, in Pictures

Well, this might be the hardest post to write up.  Not because I don't know the material, but because I know the material but don't like the facts.  I love the pictures (because Natty took them), but I don't like looking at them.  Knowing I'm fighting cancer is one thing.  It's a totally different thing to see myself as a chemo patient.  Does that make sense?  So, please bear with me as I work through some very difficult feelings (this may be random, and I apologize) while trying to give you a rundown of day one of chemo.

So, the day starts with me getting the kids off to school and mentally prepping them, reminding them that today is a "chemo day."  This discussion includes a reminder that I won't feel well, answering questions they ask, letting them know who will be picking them up from school, who will pick them up from daycare, who will get them dinner, etc.  There is a moment at school where I take a moment to hug them a little longer....I need the reassurance as much as they do, I think.

Day one of chemo is a very long day.  Assuming I've already done my lab work on a previous day, we cut about two hours off the schedule.  That's the new goal - to get my blood work done the day prior, so that they have the numbers they need before I meet with the med-onc (medical oncologist) team.  When they pull my blood, they run a lot of tests on it - CEA (my cancer marker), cbc (complete blood count, which is white, red and platelet counts), etc.  Those are the two that they normally pay attention to, or the two that I know for sure that they pay attention to.


As I said in an earlier post, one of the benefits (in my opinion) to being at CTCA is the ability (nee, requirement) to see your med-onc team prior to each and every chemotherapy session.  So, each infusion session starts out with a medical appointment.

Checking in at the clinic....this lady (whose name I can't remember) is awesome!  

    

When they walk you back, you get the typical vital check-up (height, weight, bp, etc.).  

 This is my cancer ass-kicking binder; yes, I've blinged it out and decorated it.  Did you doubt me?

And, yes, I have a list of questions.  For those that know me, this can't come as any kind of a surprise.

Then, there is a pretty specific schedule that we stick with - once the MA is done with the vitals, the med-onc team comes in.  My doc is Dr. Shildt (whom I adore) and he is accompanied by Roxanne, my care manager.  Discussions are around my current CEA levels, how I'm feeling, how my side effects are going, and what I need from them.   

 

I adore my team.  They are amazing, and have my full confidence.  If you're in the Phoenix area, you might see them both on CTCA commercials that were filmed last month.  Not sure when they will be airing, or if they will only be in Phoenix.  

Okay - once we have orders for chemo from Dr. Schildt, my naturpoath, Dr. Adam, comes in to talk side effects, etc.  I really like him - he's soft-spoken, but confident and honest.  Once we are done with Dr. Adam, we talk with Barbara, my nutritionist.  Again - amazing person to work with.  This process of meeting with my team can take anywhere from an hour to an hour-and-a-half.  

After we finish up with all of that, we head to scheduling to get the next round of chemo and any other appointments taken care of.  They only schedule one round ahead, since they never know what's going to happen from round to round.  

Trying to schedule everything isn't as easy as it sounds - between infusion, meetings with my med-onc team, chiropractor twice a week, O/T twice a week, massage, acupuncture, and now speech therapy (to work on my chemo brain), it takes a bit to figure it all out.  This can take upwards of 30 minutes.  

I just realized that, in the pictures above, my port has already been accessed.  On this particular day, they had pulled blood work prior to my med-onc appointment.  Moving forward (starting next week), I'll be doing lab draws a day or two before my meeting with the team, in order to cut down on the waiting time between appointments at CTCA on the day of infusion.  There is a mandatory two-hour spacer built in between lab draw/port-access and medical appointments, and since the combined time between meeting with the team and infusion is already 6-8 hours, I figured having them poke me with a needle the day prior is worth two hours of my time on the day of infusion.  

Port access - this sucks.  If you're squeamish, you might want to skip this paragraph.  Just a warning....won't get too graphic, but you know - better safe than sorry.

Before I even leave the house for CTCA, I slather Elma cream on my port.  This helps numb the area, so I don't feel the huge needs get stuck in my chest.  The cream has to be on my port for at least an hour, and once the cream is on, I cover it with Saran wrap to make sure it gets absorbed into the skin.  If you've ever had a tattoo, it's the same concept of when you are done and they slather you up, then wrap you up.  I have actually had folks ask me if I just had a tattoo done when I'm out and about with my Elma cream on.  I should make up a kick-ass story, but I just tell them the truth.

This cream is awesome, because I literally don't feel a thing when they poke me, which is good, given that I don't really like needles all that much.  

So, I get to the port-access room and the first thing I get is mints.  It helps mask the taste and smell of the saline when they flush the port.  What does flushing the port mean?  I'm so glad you asked.  Bear with me.

  

 

To maintain a sterile environment, both the nurse and I wear face masks, to try to cut down on the number of germs that are in and around my needle area.  This is especially important as my white blood counts starts to get compromised by the chemo.  (If you remember from my chemo in 2008, I had a wicked time with a port infection.)  The nurse will clean the area, then tells me to pop a mint.  In the needle goes (it's more mentally difficult than anything, since I don't feel it), and we get started.  

This is the way the port works.  Thought this might help you understand...

She gets the needle in, gets everything situated and packaged up.  They use a special dressing on me, because my skin has become very sensitive to the adhesive glue on normal bandages and tape.  It's fun. (Blech.)  The nurse confirms that she can not only get stuff into the port but can also pull blood from it.  When she flushes the port, she injects saline into the port.  For some folks, this doesn't affect them.  For others, this causes a salty, gross, dirty-feet taste and/or smell.  This is what I deal with - taste and smell.  It's DISGUSTING!  The only thing (for me) that helps alleviate this is mint.  

Side note:  This past treatment, I forgot my mint when they flushed my port.  Instead, the nurse had me try a cherry lollipop to get the taste out of my mouth.  This.  Did.  Not.  Work.  Ha - lesson learned.  Nausea before you even start chemo does not make for a good way to start.  I promise you that.

Ok - so, we get done with the port access, and we get ready to go back into infusion.  

 The long walk back to infusion.  *sigh*  I have NO idea what I'm doing here...laughing, maybe?  

When I first get to infusion, they get vitals again (height, weight, bp, etc.).  Then, I get walked over to my infusion cube, and get settled.  

This was right after she flushed my port, and the nausea kicked in.  See how pale I am?  Yes.  I thought I was going to be sick.  Poor Natty...luckily, this calmed down after a bit.  

Mom and Dad and I, in the infusion room.  I can't thank them enough for what they've done for me, and for helping me through this.  Couldn't do it without them.....no doubt about that.

On this particular visit, my chiropractor Chuck came up to do my adjustment while I was hooked up to my pre-meds.  My pre-meds are anti-nausea meds, anti-heartburn meds, Benadryl (to make sure my body doesn't immediately and completely reject the chemo), etc.  I have about a half-hour of pre-meds before they start the chemo, so this is a good time for the chiro appt.  :)

He's not shooting me, I promise.  It's a machine that helps him adjust my back.  I adore my chiropractor...

One of the many benefits to CTCA is the capability to get food and drinks while you're getting chemo.  They offer up just about anything you could want - full-on meals (this is me, figuring out what I want for lunch), smoothies, coffee, etc.  Sometimes, I only want fruit salad.  Other times, I want a full-on meal.  I think on this day, Natty and I had chicken quesadillas.  Yum.  It seems like a small thing, but when you've been in another facility that bans food and drinks, this makes all the difference.  And, when you're nauseous, sometimes, the only thing that helps settle your stomach is food.  That's often the case for me....snacking helps.  A ton.  It doesn't help my waistline, but I figure I can work on that once I beat cancer again.

Ah, yes.  There's the quesadilla.  And, my savior, Diet Dr. Pepper.  I've NEVER been a fan of Dr. Pepper. Since this all started, though...yes, the Doctor and I are good friends.  Apparently, according to my friend Jena, this is good with vanilla vodka.  I will be trying this.  :) 

Another nice part of  this facility is that there is room enough for my family to be there with me.  Dad usually brings his laptop, Mom brings her tablet, and I watch the tv in the chemo cube.  It works out.  Oh - in this picture above, you'll see the bag from the pharmacy.  CTCA has an on-site pharmacy that fills all of my current scripts.  On this day, I had several to get filled.  They brought them right up into the infusion room for me.  Awesome....it's nice because I don't have to worry about getting down there before they close, or going back during the week I'm feeling crappy.  

The chemo and meds they pump into me always, ALWAYS, make me cold.  They provide warm blankets, and they also have an in-room warming unit (see the tubing behind me in the picture above?) that literally pumps warm air at you - I usually put it under my blanket.  So awesome.  It can also pump cold air into you.  Such a wonderful amenity.  

Eventually, with them pumping so many meds and fluids into you, you'll have to pee.  But, with the meds they put in me, I'm not always stable on my feet.  So, I need help getting to/from the bathroom.  Dad and Mom are angels, I tell you.  This is me and Dad, walking with my chemo IV, back from the restroom.  

In all honesty, I always feel really good walking into the infusion room; it's been almost two weeks since the last chemo, and I'm back to "normal", or whatever my new version of normal is.  By the time I leave chemo, I'm exhausted.  They have pumped pre-meds into me, then Avastin, Ironitican, and Leukovorin.  Those drugs make me tired, weak, nauseous, and miserable.  But, they are essential to helping me make sure I have the best shot at kicking cancer' ass once again.  I get that, but I don't have to like it.

As much as I wanted to spend time with Natty and make sure she blocked out time for herself and her family on her calendar (LOL), I zonked.  Between the Benadryl and the Ativan I asked for to help settle my tummy, I was out cold.  She apparently took this picture just before she left.  I'm sorry I wasn't conscious to say goodbye to her, or to thank her.  It was wonderful spending the day with her, but I *so* wish it wasn't at chemo.  

So, that's a day in my life of chemo, day one.  I'll try to get pictures this next round of my pump, etc.  I'll admit, writing this all down has been easier than I though.  But, I also took a lot longer to get this down in words than I wanted to.  I don't like that I'm going through this.  I hate that I look like a chemo patient, not because I'm ashamed, but because I don't like looking like a chemo patient.  No rhyme or reason....it just is.  

Any questions?  :)

Head Shaving Pictures

Well, as promised, here are some of my favorite pictures from last Saturday.

All of these pictures were taken by my beautiful friend Natalie.  Here's a picture of Natty and me.

My husband, my rock.  I can't wait until he can be home with us all the time....

I am so proud of my gorgeous family.

Hands down, my reasons for fighting.

Such a team we have here - together, we can do anything.

  

Good Lord, we made some good lookin' kids.

     

 

I can't imagine my mom ever expected to have a daughter with blue hair, but you learn to deal with eccentricities.  :)  Love you Mom....more than you know.

Go.  Fight.  WIN!!!

Cher, Natty, Akemi and me.  Part of my amazing army....

  

Smooches from friends makes everything better.

Ready for the fight - not sure Scott knew what he was getting into when he came over that morning.  LOL!

Cher, an amazing friend that I wish I had gotten to know sooner.  But, we've got time now, don't we?  

 Getting things ready - here we go.

Julia took the first shave.  I took a deep breath.  Once this started, there was no turning back.

 It was important to me to have the kids take a big part in this process.  Kevin appeared to REALLY get into it.  He wouldn't let go of the clippers for a while! 

  

  

    

All right, we are done.  

This was the first time I looked at myself in the mirror after my hair was gone.  Pretty emotional, even now, looking at it.  I still have a hard time, and it's been a week.  

My mom had a hard time watching this happen.  I can't imagine what she and my dad are going through, and I feel guilt everyday for being the cause of so much pain.  I also know that they wouldn't be anywhere else, and I don't know how I'll ever be able to thank them for everything they've done for me and my family. 

As always, my little girl made us all laugh by bringing over the mommy doll with no hair (on loan from CTCA) to show us the comparison.  

This was the first wig the kids wanted me to try on.  :)

And this is the one that I'll wear out in public, assuming I can get used to it.  It looks good here in a picture, but when I have it on my head and am looking in the mirror, I don't know who this person is.

Playing with the wig, trying to make it feel normal.  I'm still working on it.

  After the day was done, Akemi, Julia and I headed to the mall to try out some new make-up.  Levi met us there, and he and Jules walked the mall while Akemi and I took some time out at the MAC store to see if we could make this mug look decent.

Not too shabby, eh?

Overall, it's been an emotional week.  I thought it would be a lot easier on me than it has been - you wouldn't think, with all I've been through, that this would be such a big deal.  But, it is.  It's one thing to be a cancer patient; it's a completely different thing to *look* like a cancer patient.  I've caught visions of myself in a mirror or looking at pictures, and it's hard.  I'm not ashamed; please don't think that.  It's more that I'm viewing myself differently now.  I don't know if I can explain it.  Up until now, I've been able to maintain a semblence of normalcy - I was going through chemo, but I could still pretend my life was normal.  Now, I look the part.  That takes some getting used to.  

I'm hoping that this week I can get used to the wig more, and maybe become more comfortable with being bald in public.  It's okay when the kid and Levi are with me, but when I'm just with the kids or by myself, it's different.  I don't want people to feel sorry for me, and they do.  I can see it in their eyes.  Maybe as I start to feel better this week (every hour tonight, I'm feeling stronger), I'll get over it.  Maybe I'll just learn to deal with it.  I don't know.  

Emotionally, shaving my hair has been harder than I ever thought it would be.  I don't know why.  I don't feel like myself anymore.  I feel like an imposter.  I'm hoping this gets better as time wears on, and as I get more acclimated to being bald. 

I have more pictures from my round of chemo this week - Natty accompanied my parents and I on day one of round three.  I'll post those soon, with a description.  Again, many many thanks to Natty and everyone that joined us this past weekend to help me on this step in this journey.