Week Off! Yipee!

This was week 4, AKA the week off chemo, in my regimen. And how did I make the most of the extra 8 days of energy? -So far I have used it to be frustrated about housework.  What a waste! Mentally I know it is a waste, but I can't seem to harness my mood and get focused on something that is worth my energy.  (OK, now you know my dirty little secret)
How do you do it?  How do you get through the stuff in your house when it gets too cluttered.  I used to be so good at it, but perpetual clutter is one thing in my life that has changed with cancer.
Honestly, I can go on for days about all of the things that have changed for the better in my life as a result of having cancer.  But, this one - having too much clutter - is a shame to me.
Ok - enough.  That topic is off the table for tonight.
I'm bald!  It is finally over.  Loosing your hair is really weird.  I anticipated doing a great little blog series on what it is like knowing that someday another cancer patient will be going through alopecia may read this blog and would be glad to know what to anticipate.  So, lets skip to the last chapter of "How to loose your hair".
Days after loosing my hair the first time I had cancer I was at the mall with some of my sisters.  It was summer and my poor little body was dealing with a lot of hormone changes.  First, right in the middle of the shoe store I had a hot flash!  Second, I was learning to wear scarfs and couldn't get it tied so that it would stay in place. These two things and others I have forgotten by now made me just rip my head covering off right there! I heard a sweet little girl about 5 years old turned to her dad and say, "look Daddy, I think she has cancer".  That poor dad, he was trying to hush her and make her not say anything, I guess he was embarrassed that now he and his daughter were being singled out just like bald me.  I just turned and in a "you are so smart and courageous to tell the truth" voice told dad it was ok and told her she was right.  That little girl knew cancer - from such a young age - she had already had a front row seat to this show.  It really opened my eyes to the reality - everyone has had cancer touch their lives.
At least one other time during my shopping trip I was stopped by someone who had danced with cancer and wanted to encourage me on my journey.
My Sinead O'connor II experience it has been interesting.  At work, people have been extra careful to smile big, other mom's in the girl scout troop are so aware of the hair change and worried about me.  Me? I am just worried about how my kids are responding.  When kids see mom go bald it all becomes serious.  That makes sense, right? - if mom's bald - we got problems!
So, Monday when I found that the itchy scalp was distracting at work and just annoying I came home and asked if the kids thought it was best to wait for hair to fall out or to shave it off.  Luckily, they thought it would be best to shave.  So I asked if they would like to do the shaving - of course!!!  So, I hired 3 new hairdressers.  It was good for them to have some of the control - they finished off my hair - it didn't just happen while they watched.

Aren't they cute!  And, look - they turned me into A Hollywood Warrior, GI Jane.

Loosing hair during chemo

20 days after starting Abraxene: 

My hair is beginning to come out, but it is very minimal now. Here's how it started.  It is just a few strands at first that takes BigSexyHair to BALD-and-BEAUTIFUL.

I probably lost 25x that throughout the day. My scalp is really itchy and is covered with a stinging sensation.  It feels like you are getting a perm (remember the 80s?, perms and claw bangs.  Ya, I did that) and the perm solution is left on a bit long.  It was much the same a couple of years ago when I was taking the red devil.  (I had all the side effects listed here, and more.  It was a powerful (read pain in the ...) drug).  But - it is also a killer, in a good way.

I think the waiting is the worst part. When you find out you are going to loose your hair from chemo you  have to reconcile that fact in your mind.  When you have accepted your new fate, started telling people it is coming, and even buying wigs, scarves, or hats then it feels ok. But when you have done all that and your hair is still there you have time to start getting mad that you are going to loose your hair again and the you have to reconcile. 

A few days ago I ordered some scarves and yesterday I picked up my packages from the post. They are so pretty! I purchased a black and white batiks print and a jewel toned one from headcovers.com. I loved the selection and prices on this site. I definitely recommend them. Next I would like to get something with fall colors. Maybe like this solid beige.  But, I do love prints too, like the stripes.  Maybe even a floral.  Choices!

My new head dresses

I also ordered a wrap from GoodWishes.com.  LOVE THEM!  I am going to write a post about this awesome company and tell you how women with alopecia can get a free wrap or scarf!  I saw the marbled cat
and thought it would look awesome with a black blouse, jeans and gold jewelry.  I love the wild element too - you can't fight a tame fight against cancer.

3rd Abraxene, still my own hair 

Here is the head covering I am sporting now, from my plastic recliner at the chemo pharm.

Treatment went great today.  I really wished there was some Frank Sinatra playing so I would take my dance-partner/IVpole out on the floor between trips to the bathroom.  My tumor markers are doing arial stunts with nose-dives in the 50s this week.  (The normal range is 40-ish.  I was over 300, now under 200 again)  But, treatment takes a long time.  Between signing in, waiting to be called back, vitals, and blood work to be sure I have enough white blood cells for chemo, waiting for the chemo cocktail to be mixed, getting pre-meds, getting chemo, flushing the line, scheduling a follow up... I can't get it under 2 hours.  I really wish I was a nurse.  I would run my own chemo right at my office desk.  It wouldn't bother me at all, but for those who aren't used to the scene it may be distracting.  But really, when you are living with chemo the routine needs to fit into your life a little better.  Stage IV patients are looking at a long term situation.  What a blessing for cancer to become cronic and not fatal.

Now the treatment needs to catch up to patients like me who are the sole-provider for their family, raising young children, and trying to build a future not tiptoeing into retirement or disability.  It isn't home health - it is office health services. (My name is breastcancerwarrior@gmail.com and I approve this message.  I also claim it as my original idea for a business.  I will sue you if you take it!)

BTW - tomorrow is FRIDAY!! :)

Trendy Blood, Coming Out of the Cancer Closet, and Veterans

There it is folks - the line graph that measures my cancer-ous-ness. I know it haven't posted one in a while and I am sure all the statisticians who read my blog have been hungry for this linear art work.

I gave you the "normal" range at the very wee bottom of the graph.  And, as you can see,  
I am an over achiever.  I have a superior level of the antigen named CA 27 29.  (such a scientific name for a steady bedfellow in my life)

So, Xeloda is not tolerable but it is working.  Doesn't that seem like an oxymoron?

When I call Dr J's office and spoke with Nurse S I said, "well, maybe I should tough it out."  She rightly reminded me that if it isn't working for me it isn't working.  I have other options.  Quickly I snapped back into the present and remembered why I called.  I wanted to commit myself to taking the next chemo option.  So I asked her to be sure my pre-auth for Abraxene was in place so that if that's what Dr J and I decide to do on Thursday we are ready to roll.

So, now you have it.  I have found the faith to "pull yourself together girl!  Decide what you are going to do, and do it!  Move forward with surety in your decision.  Show your faith that with God all things are possible."
 
I also decided today that it was time to come out of the closet at work.  I gathered my co-workers in the hall and told them that I am in active cancer treatment and have been for about 8 years.  I explained that it can no longer be a secret because I will likely be bald again, or as my children called it when I went through this before "topless" because there was nothing on top. ~Innocence of being under the age of 5.

I don't want to be bald again - it makes it obvious that I am sick, and I don't want to be seen as that sick girl.  But, when I see the picture of a woman who is bald I feel a kinship and admiration for what she is doing.  I can spot a wig from 20 paces.  And, when I see a bald man, I look to see if he has eyebrows or a 5 o'clock shadow.  If he doesn't, I know I am in the presence of a warrior.

It is the same reverence I feel when I see a man or woman who walks that way and you know they have learned to march in formation.  It is a certain way of moving - it isn't a strut - but sometimes they have that too.  They wear tattoos different than others.  I am guessing because they are often symbolic of a platoon they love or battle they faced.

 
I love veterans, I have 3 in my immediate family - my dad, brother, and brother-in-law.

Plus, I had such an awesome time meeting some of my brothers buddies a couple years ago before he deployed to Afganistan.   It was amazing.  In fact, getting to know them gave me a lot of peace while he was gone.  I could see the devotion and friendship they had, and I knew they had each others backs.

Even with this love I have for vets, I don't know if I can love a vet more than a cancer fighter.  Both have seen war that threatens to demolish what is precious.  Freedom from oppression.  Tearing apart families.  And, both have learned to make that warrior a part of their soul.  They say "hooah" and "semper fi"  we say "have I met my out of pocket?" and "how much is the co-pay?" the meaning between the words is so alike.  We are saying I am not going to give up.