Went to my first support group meeting yesterday.  It was an open forum so we could talk about anything.  It was very insightful.  There are about 8 women at all different stages.  I’m the new kid on the block.  They serve lunch, which was soup and a salad with grilled chicken and a brownie.  It was pretty yummy.

We went around the room and everyone introduced themselves to me.  It’s a pretty diverse group. Good to get to hear what everyone has gone through and what they are going through. They gave me tips and the do’s and don’ts and the what to watch out for’s.  I guess there is a retreat in October and in a couple weeks they are talking about going on a fly fishing trip.  Okay, I don’t fly fish, but I asked if they would teach me and they said of course.  Now fly fishing…the motion is good for lymphedema and post surgery. (really hoping I don’t get lymphedema…doesn’t look like fun)  It was a really good experience.  I’m glad I went.  Of course it also made me realize what a long road it is and that there is no more normal.  This is my new normal…at least for quite some time.  Then I get a new normal once I become a survivor.

Needless to say, yesterday ended up not being a good day at all. Total melt down.  Which happens. I mean I have my breakdown for a bit and then move on.  Today was a good day.  I think sometimes I need to just lose it to work through things.  I actually figured out that one of the reasons I have these little melt downs is because I have no structure in my life right now.  I mean ever other Tuesday I go in for Chemo and then the next day shot.  Oh and meds.  But I am a planner. I am so used to having everything planned out and doing something.  I am the type of person that if I don’t have a schedule to follow and a goal I melt down and do nothing and then the downward spiral happens.  Well we certainly can’t have that!  So I planned out my activities for the rest of the week. (yes I realize it’s Thursday…baby steps here)  And I’m going back to planning out my week on Sunday’s.

The hardest thing I struggle with is not letting this control me.  I find myself falling into this pattern of “I have cancer and I can’t do…”  Well bullshit.  I am Erika and I happen to have cancer and I can do…. Yes there are days I struggle to do what I really want and am a little to worn down. But it doesn’t mean I can’t do anything and won’t do anything.  So….here we go back on track.  Back to exercising. Back to doing some on line class or something to keep me occupied.  Back to working on transferring my business model up here.  Focus.  And of course I have the house stuff to fill in the rest of the time.  I have to stop letting this define me but make me define it.  You don’t OWN me….

Well, I entertained myself this evening by taking pictures of the back of my head. I mean I have to say I have never seen the back of my own head before like this.  Considering the last time I had no hair I was like 1….So that was interesting.  And I’m kind of shocked of how absolutely near perfect the noggen is.  I mean, I don’t have any crazy lumps or marks.  I thought for sure I would have some freckles or beauty marks or something.  But outside of the few little bumps here and there…I’m kind of impressed.  I think it would be a perfect spot for someone’s logo.  Just puttin it out there….Marketing op!!!!

Well blah blah blah….RANT RANT RANT.

I thought I would be more emotional about the whole head shaving thing.  And I really wasn’t.  It totally wasn’t as bad as I thought it would be. It was actually kind of liberating.

Ten days.  That’s what this has been…a whole 10 days.  The first picture is March 5th.  The last time I wore my hair the way I normally do.  Then ended up having to braid it.  And today the 15th just buzzed it.  It’s part of controlling the cancer and not letting the cancer control you.  I have to remind myself I’M in charge of this…so taking the power away from Cruella and her evil plan.

I know when it grows back we are going to have a blast working through all the different hair styles.  I get to see what I like the best for my new phase in life.

And a huge thanks to Janae who is my official Hair Angel.  She was wonderful and made it very easy and fun.

Well, I taught knots in Boy Scouts so this shouldn’t be hard right?   HA!  Way different!

Since my hair is now falling out in clumps.  It’s disturbing.  I have decided I really need to learn the fine art of scarf tying.  So my first attempt.  I remembered I had a box of old scarfs at the house in a box. (and I found it…thanks to my wonderful husband)  Now to see how to make them all work for me.  This part is very emotional and upsetting and exciting all at once. Exciting in the sense that I get to create fabulous stuff for my head. And let me tell ya…the Black Women know how to tie a scarf!!!!  So this is totally dedicated to my sisters of color out there who rock a head scarf (and any head gear) like nobody’s business!!!!

So first attempt:

Hopefully with some practice I’ll get some fabulous things going with these.  We’ll see.

So I just registered for this program they have for cancer patients and survivors.  It’s called Fit to Fight and it’s a free fitness program that the local fitness club runs.  It’s an 8 week session twice a week.  I get a 2 month membership with it too.  So that’s kinda cool.  It’s broken down into fitness education, Pilates, Yoga, meditation and then it moves to the floor for cardio and resistance training.  I’m pretty stoked about it.  They run the program 2 or 3 times a year which is nice.  

So more positive stuff coming out of all this….

They did hold off my anti-estrogen shot for today since the insurance hasn’t decided if I really need it or not.  I’m glad the insurance companies are dictating my treatment to an extent.

I’ll stop before I go on my insurance RANT! RANT! RANT!

So whats it really like?  I know a certain picture is painted from one extreme to the next, and they are all right.  As I sat in chemo yesterday observing and listening to people it’s amazing how differently the body reacts to the different types of meds being pumped into your system.
No two people are going to go through chemo the same. Some have minimal effects (although still effects) and others have all the effects and create new ones.  Not to downplay any effects because it’s all in the reality and tolerance of the patient.

I seem to be tolerating very well on the general scale for the types of chemo I’m going through.  It’s very aggressive and my situation could certainly be worse.  But it’s not to say it’s all peaches and cream.

Day 1 of the cycle is filled with nerves and anxiety.  Will it be better or worse than last time?  Will my numbers from my blood work be good?  And if not what will happen?  Will the port function as its supposed to?  Will I still react the same? Will I cry again for no apparatus reason?  Will the doc show up with good or bad news on something?

Then you chill a bit once it gets started.  You can feel the different effects from all the different drugs they give you.  I’ll have to count but in 3 hours I go through like 4 stages of drugs.  Cocktails, appetizers, main course and dessert. (Yes I have to relate to food) in 3 hours you sit there.  Some read, some color, some sleep, some cry, some talk, some are just pissed and fed up, some are losing hope, some are filled with hope.  After Happy hour is over you get your appointments for next cycle and you are on your merry way.

Well then you are home.  Everything is pretty okay. I start getting a little funky feeling about 2 hours after. (Which us why you have cleaned and ran all your errands the day before).  For the next 4 days you are a slave to pills!  If you don’t like pills then…you are in trouble!
You’ve got 3 different types of anti nausea pills that if you miss you go down that road.  I have not been down that road yet and hopefully I wont.  You’ve got the insomnia/anti anxiety pills, visine so you don’t look completely comatose and the stool softeners…..oh and the pain pills should you need them.  I try not to take them too often …I’m useless on those! But sleep. Yep like clock work. Take my last meds at 9pm. Usually fall asleep about 10. Then wake up somewhere between 12 and 2am. Move to the living room because I’m a mess and other people need sleep too! I check email and FB and then I’m here. I take more meds since I’m up and the stomach is flopping around pretty good. (Standing to the entrance of “that road.) Then will fall asleep for an hour until Pete gets ready for work and I take the dog out. Then try to get another hour or so in before Miss cleo decides she’s up for the day.

Now see this mess?  Again why you organize before day 1 of cycle. You’ve got drugs, notebooks to track things, information in the form of books and pamphlets on everything you are going through just in case something seems weird…..or you are totally neurotic and need to read the same effects on A/C on your system over and over again. Of course lotion because you wash your hands 300 times a day.  Nail files because good nail health is important. Your little bin filled with good luck trinkets and crystals that your son made you 20 years ago….totaly adds to the good juju.  And what ya can’t see is the laptop and a big glass of water that never leaves my side.  It’s real and a full time job.

So about day 5 or 6 I come out of all this a bit and just shake my head and re organize everything. I say wow to myself a lot. I often have the thought that I can’t wait to get back to normal.  But THIS is my new normal.  I try to control the things I can (shaving my head on my own terms next tuesday) and not let the rest of it consume and define me.  This is temporary and I have every intention on coming out of this to yet another new normal.  I know there are parts of me that will change forever.  Some of us need drastic measures to teach life lessons.  And I accept that.  One piece of advice I was given (from a book!) You don’t have to like something or agree with something, but you do have to accept it. .  So this is what I’m doing.  I’m not bowing down and letting it win by any means. I’m accepting that this is what situation I’m in and how and what am I supposed to learn from this.  Where is this going to take me. What new venues will I experience because of it .  Looking at it this way makes me a little excited for what I’m going to learn and what this life has in store for me.  And what will I choose to do with it .

Well today was my 2nd treatment.  So much easier with this port.  Which everyone now calls Perdita.  So good thing I got the name picked out.  Didn’t hurt at all, which was a shocker.  But now it starts.

So here’s how chemo day goes.  I go in and they draw blood.  Run my numbers to make sure everything is good.  Then they give me the fun anti-nausea meds.  This takes about an hour.  Then I get the red juice. and then the white juice.  These take an hour each.  I refer to them as courses and the entire experience as cocktail hour(s).  They flush the port and unplug me.  It’s all pretty exciting. I sat out with the general public today.  (the other patients vs. a private room) Figure I would be a little more social.  And don’t cha know….

Met a woman and man who live about 2 hours from here.  They moved here about 20 some years ago from California.  Well her grandson is coming in from Philly tomorrow.  And of course I ask….oh…Philly?????  And she was like, yeah, she and her husband are from Mt. Holly and West Deptford.  Go figure!  I mean what are the odds.  They moved away like 54 years ago.  I knew from her disposition she was from the area….she’s quite the spitfire.  We had a total blast today.

But you ask…what does one do sitting there being pumped with drugs for 3 hours.  Well.  We talk.  There were snickerdoodle cookies that someone brought in.  They were yummy…And color. Totally started the color thing. So yeah.  The time goes by pretty quick.  Not too bad. But I’ll have everyone in Tiaras coloring by next treatment.

So what happens next.  The steroids they give me wig me out a bit.  So that lasts for like 3 days.  Then the one meds I take on days 2, 3 and 4 I can cut back a bit since they make me not function well.  Those are the ones that get me all foggy and I repeat myself and have trouble forming a thought.  And I’ll be tired.  Very tired.  Then about day 4-5 I start feeling a little bit normal. (normal for me)

Tomorrow I go in for my white blood cell booster.  That’s a good time.  I’m also getting some anti-estrogen shot tomorrow to shut down my hormones.  This is supposed to help chill out some of these cancer cells.  So we ‘ll see how that effects me.  Yay hot flashes!

But they said that any symptoms I would get I should have already gotten.  So if this is the worst it gets, okay.  A little foggy and tired.  I can do that.  Let’s just hope it keeps up.  I’m half way through the knarley treatment that runs every 2 weeks.  Then I switch to once a week with a less potent chemo drug for 12 weeks.  The idea is to shock the bugger, paralyze it and then hit it low and steady over an extended amount of time.  Then we can take it out!

All I got right now is that the hair is starting to come out.  Which makes me very sad and kind of freaks me out a bit.  But it’s only temporary, and it will grow back.  You can prepare for it and know that you will wear fabulous scarves and stuff but when you actually run your hand through your hair and clumps come out its a bit unnerving.  I just look awful with short hair anyway…let alone bald!

But alive and being able to see, hear, and function is more important that something superficial like hair I suppose.

<deep breath>

It will be okay.

That’s about as up beat as I’m going to get with this one.

Yesterday I went to this free service they offer to cancer patients.  They go over make up, skin care and all that jazz for when you go through Chemo.  There was only 2 of us and the lady said they didn’t know if they were going to continue the program because of lack of interest.  Well I told her the flyer I received was incorrect and if I hadn’t called the Local Cancer Society I would have never known when it was.  I went and talked to the social worker who helps run some of these programs and let her know.  She was like if I could think of any way to get the word out and see if we can’t revamp the program she would love the help.   The below picture is all the stuff I got for free! There’s also a cute silver make up bag that didn’t quite get in the picture….

Then while I was in my make up session I got talking to the lady running it and we got all into the Event planning topic and we are going to get together to see if we can come up with some sort of plan to generate some interest and business around town.  They already had their Bridal Fair here and she said there are currently no Wedding Planners in the area (that are specifically certified like yours truly)  After picking her brain about the industry around here I’m going to revamp the website and tailor to more around the needs for this area.

I had my Port-a-Cath inserted today.  This is a device they put under the skin that feeds directly into one of the large central veins that takes blood to the heart.   They use a special needle to access my bloodstream so they don’t have to keep giving me an IV for Chemo and blood draws.  Now they can just hook me up.  Makes things easier for everyone involved.  And my veins will thank me for it later. I always get all freaked out by surgery but have such a good time with the OR staff, so not sure why I worry.  I had the nurses singing Cherish by Madonna upon my entrance into the OR.  They had the radio on in the OR and turned it off.  I’m like Turn that up!  And the last song I heard when I went under was Lips Like Sugar by Echo and the Bunnymen.  So that was kind of cool.  But everything went well.  I came out with little to no pain.  I’m really kind of an easy patient…

Power Port front

Power Port Back

I get a key ring notifier, an ID card and a little bracelet that I wear to let the world know I have one of these.  So no more poking arms and hand for IV for me!  It’s called a Power Port

I’m currently set up with some pain meds and the remotes.  So things are good.

Resting up this weekend before Cycle 2 starts on Tuesday!