Friday, June 30, 2017

RADIATE LOVE

I wrote the following poem on March 30th.  15 days after my bilateral mastectomy and 42 days before my first day of radiation.


Let the Warrior do Her Job

The battle begins with a diagnosis.

Decisions are based on Worrier versus Warrior.

Sometimes there are no decisions to make.  You do what you are told.
The Worrier says whew.
The Warrior stands alert.  Greedy for a decision to make.
Owns it.

Always deep within, sometimes surfacing, I know I am going to live.
And I don't just mean with a beating heart.
The Worrier says is this false hope?  How long?
The Warrior blows up her hope balloon and protects it from the poison-dart arrows full of nope.
Shouts forever as her war cry.

To radiate or not to radiate.
The Warrior says Radiate.  Shine.  Illuminate.
The Worrier says that's not the kind of radiate I'm talking about here.

I visualize the war paint covering my worry lines.
I am Colorful.  Fierce.  Unafraid.
Let that painted girl make the decisions.

Let the Warrior do her job.


2 weeks ago today was a day of celebration.  I rang the bell to celebrate my last radiation treatment. It began on May 11th and I had been going every morning (Monday through Friday) for 5 weeks.  A total of 25 treatments.



7 weeks ago I felt resigned, full of dread, fear, uncertainty, sadness ... but ready.  Because something you don't want to be happening can't end until it begins, ya know?

2 weeks ago today I felt elated.  Like I could fly!  FREEDOM.  


Some super sweet ladies right here - they were with me for 5 weeks.  It's an intimate situation and these ladies made me feel comfortable and like was a friend.  Is it weird to say that I miss them?

And TODAY?  Today I feel so light and bright!  I got my little bit of hair highlighted this morning and I cannot stop smiling!  I can't wait to pick up Tanner from camp today so that he can see that Mommy's hair is no longer "black" and back to "golden."


The amazing Nicole ... hairstylist and friend.  I've missed her these past few months!




Lightened up hair and soul



I want to address why I got radiation.  I've had friends/family/acquaintances ask me over the last couple of months, why radiation?  You've done so much:  chemo, mastectomy.  Do you have to do this?  

The standard recommendation for me (Stage III, HER-2 positive breast cancer) was to complete a minimum of 5 weeks (I was originally told 6 weeks but  was told 5 would be enough as I was doing so well) of radiation therapy.  The only way for me to really avoid this was to agree to a clinical trial in which I would have a 50/50 chance of either not getting radiation or proceed with radiation and be monitored for a minimum of 10 years.  This is a relatively new study with no results yet.  Obviously, what is being researched is are they doing too much?  Can someone like me have the same results of no recurrence of cancer if they do not get radiation?  I think this is a wonderful trial and I wish so so so much love and respect and positive results to the brave souls who have agreed to the trial.  Not to say that I'm not brave or that those of us who chose not to do the trial aren't brave.  Because, we totally are.  To face radiation and the short term and possible long term side effects .. takes many deep breaths (literally) and faith and bravery.  

I chose not to be a part of the trial and the chance of avoiding radiation because if cancer were to show back up in my lymph nodes someday, it is difficult at this time to treat with chemotherapy.  And, I had to go back to my mantra of the goal being to live as long as possible.  For me, in my mind, radiation was a fit to help me reach that goal.

Ok, so ... how am I doing?  Good.  My radiation oncologist says I did GREAT.  She was very pleased.  I was so red.  Oh my gosh ... it was like a super bad sunburn in the areas where I was given treatment.  I couldn't stand to have a bra on up until this week and didn't even feel comfortable having my right arm down by my side for awhile.  I was a little itchy which I noticed most at night when I was trying to sleep (I know right?!)  It was no fun but it could have been worse.  Before I started, my oncologist warned me that she thought because of my fair skin and the skin sensitivities I have developed because of chemo that I would have some problems.  Like really bad burns and/or blistering.  She said it would most likely happen to me and that she would be able to give me 1 or 2 days off (still have to make those up though).  But guess what people?  That didn't happen to me!  Yay me!  

Mentally, I am well today.  You notice how I put in there "today."  Today is great day because radiation is over, my hair is highlighted, I'm going on vacation!  I had a pretty emotional week during the last week of radiation.  For the first time since it had begun I was in my head a lot while laying on the table for treatment.  That week I felt like I could crumple on the floor and cry for awhile.  I guess all of that emotion is because I knew the end was near?  There's a lot that psychologically goes on for cancer patients and obviously everyone deals with it in their own way.  I haven't even delved into what all of this means for me yet.  My radiation oncologist is an amazing woman and she talked to Steve and I a bit more on this topic when we saw her for the last time.  I'll save that for another blog topic at a later date.

What now?  Now, I get to go away on vacation for 11 days.  Do you know what this means?!? I get to have 11 days IN.A.ROW. with no doctor appointments or treatments of any kind.  I have not had this kind of freedom for 9 months.  To say I am excited is an understatement!!  (The day after I get back I have infusion and a boob pump up .. so, nothing like reality when we get back BUT .. did I mention I get 11 days off in a row?!?!) LOL.  

I will continue to get my Herceptin chemo treatments every 3 weeks until the end of October.  (Yes, another bell ringing in my future).  I will get my breast implants sometime between October - December and then finally I will have my surgery to have my port removed sometime not long after Herceptin ends.  Can anyone say HELLO 2018????

In the meantime, I am healing.  Focused on health in all forms.  Focused on my boy, my Steve, my family, my friends ... LIFE.  

I'm going out in the world and radiating -- love.  

 


















Tuesday, March 14, 2017

WHAT IS IT WITH THE EVE'S?  ~ or ~ MASTECTOMY EVE

The last time I blogged it was Chemo Eve.  And now it's Mastectomy Eve.  I swear I don't plan it this way on purpose.  I guess what's going on here is that I wait until something super important is happening before blogging.  Or I think what's really going on here is that I've been busy and haven't made blogging a priority but I want to blog before I have surgery tomorrow.  Yeah, I think that's more like it.

I have been feeling really great these last couple of weeks!  It has been SO GOOD to feel good.  I have been out walking a lot and getting my strength back up, eating super healthy foods that I LOVE and enjoying the rejuvenation of my taste buds (thank goodness!) and my appetite.  And of course, enjoying quality time with Tanner and Steve and my family and friends.  This past week wasn't as fun of a week as it was busy with doctors appointments and preparing for surgery and the recovery period.  But overall, I have really been enjoying NO CHEMO.

Here are some photos of what I've been up to:


 The morning of my last chemo on February 9th.  Tanner loves my pink wig!



Some of my best girls came to visit me at last-chemo-day.  So much love!


Ringing the bell at the infusion center to celebrate Chemo graduation


Me and my honey .. such a relief for us to be done with this part of the journey


Tanner and I enjoyed a walk to the river on one of our many amazingly gorgeous February days



Our first trip to Great Wolf Lodge as an early birthday present for Tanner.  Cute wolf ears Tan Man!


Slides and wave pool, slides and wave, slides and wave pool all.day.long for 2 days!  FUN!


Don't worry Great Wolf Lodge, I'm sure we will be back



We loved our trip to Williamsburg visiting Mishie and Bryan.  
Here we are on our favorite walk to the beautiful James River.


My long-time friend Sherry (3rd from left), surprised me last week with all of these great friends for lunch!  I thought I was just meeting her but she arranged for these ladies to come too.  I was SO surprised and happy.  Love you Sherry (and you too Dawn, Heidi, Kim & Sharyn)


Tanner turned 6!  Birthday breakfast:  eggs, potato cake, bacon, toast 
AND whipped cream on the side "because it's my birthday!"



My big boy!


Here we are at home for the family birthday party.  The next day we took Tanner and some friends to see The Lego Batman movie and then had them over for play time and cake.  
Yes, Tanner had many cakes for his 6th birthday!


Look at those cheeks!  I've loved them for over 6 years now.  They are delicious.

Sorry folks, there is no photo to go along with this caption:
I've also spent copious amounts of time staring at my skull in my light up magnifier mirror looking for hair growth. There's some ... tiny, tiny but something is happening!  


So I'm getting really tired right now and still have quite a few things I want to do before bed so I just want to say a little bit about the mastectomy.

Some have been surprised to hear I'm having this surgery after I was declared "no evidence of disease" from the ultrasound I had the day after my last chemo.  No doubt, this was awesome news!  But it didn't mean that I was going to be free from having surgery and radiation.  

I was given the option to have a lumpectomy but after a lot of consideration, I decided that having a mastectomy is the best choice for me personally.  Major factors are that there was something that was missed by the surgeon at the beginning of this journey that should of been clipped.  A spot that was seen on MRI that didn't get a chance to be biopsied and clipped.  It disappeared after my first chemo but it technically should of been monitored.  It bothers me to this day that it wasn't clipped like the original tumor in the breast and the affected lymph node.  If I had a lumpectomy, I would have to have MRI's every 6 months for who knows how long.  I don't want to deal with the anxiety of MRI's every 6 months ... no thanks.  Also, my genetics testing came back wonky (more explantation on this later.  It deserves it's own blog post).

Tomorrow I will have a bi-lateral mastectomy with expanders put in.  My breast surgeon will perform the mastectomy and the sentinel node biopsy and then my reconstruction surgeon will put in the expanders that are needed for breast reconstruction.  It will be approximately a 4 - 4 1/2 hour surgery and I will stay one night in the hospital.  I have a whole list of restrictions for the next 2 weeks and should be feeling pretty good and healing well after 4 weeks.  I will begin radiation 4-6 weeks after surgery .... Maybe my next post will be RADIATION EVE.  lol.  no, seriously .. I will post before then. I think.

How am I feeling right now?  A little anxious to be honest.  Not scared.  Just a little anxious about not being able to eat or drink tomorrow (my surgery isn't until 12:30), being under anesthesia for so long, missing Tanner tomorrow night and the overall time of recovery from this.  It's hard because I've been on such an upswing the past 3 weeks making it hard to wrap my head around being "a patient" again.  BUT .. it won't be as bad as going through chemo, that's for sure and I know I'll come out on the other side boob-less but all the more bad-ass for going through it - hell yes!  And September --- I'm lookin' at you baby - new boobs month!!

Until next time .. wish me luck, love, prayers, thoughts -- all the good stuff for tomorrow.

Love, from me to you.





Wednesday, January 18, 2017

CHEMO EVE

CHEMO EVE

It's Chemo Eve of my 5th treatment and I am sitting here pondering what to write about.  Apologize for taking so long to make a post?  (Sorry)  Tell you all the weird side effects I feel from going through 4 treatments? (Nah)  Tell you how freakin' excited I am that I see the light at the end of the tunnel because I have 2 treatments left?  (SUPER FREAKIN' EXCITED!!!!!) 

There.  Post done.

jk

So, tomorrow I go for round 5 of 6.  My 6th and (*hopefully) last round of the Big 4 will be on February 9th.  I looovveee February 9th!  

*I say hopefully because I can only assume at this point that I will have an MRI soon following that last treatment to confirm that the tumors have either shrunk enough or disappeared entirely to allow me to move forward with the next step of surgery.  IF, for some weird reason they haven't ... I don't know what the docs recommend.  And I believe I won't need to know because I feel strongly that mine are going to be completely and totally GONE.  

Let's just plan on party-time for February 9th, o.k.?  

Last week I had the honor of participating in a "Pampering Day" event at the Wellness House of Annapolis.  The Wellness House is an amazing place where cancer patients (and their caregivers) can learn coping skills while dealing with the effects of cancer.  They offer support groups, health & well-being programs (yoga, massage, Reiki, etc), educational programs and fun events and activities.  So far I have attended a nutritional seminar, a day of beauty, the pampering day and have had a few Reiki sessions.  It's a wonderful place and I feel fortunate to live so close to this resource - I wish that all people going through this journey of cancer could benefit from having a place like this close to them.

Back in October my brother-in-law gave me a newspaper article from their local paper (in Pennsylvania) about an artist in that area who does henna tattoos on the bald heads of patients going through chemotherapy.  My sister-in-law said something along the lines of "I don't know what you're going to think of this .. it's pretty out there but we brought you the article anyway."  I thought it was fantastic and wished that the artist was in my area because I knew that I would love to have that done.    Fast forward to my first time touring the Wellness House where I saw a framed photo on the wall of an artist doing henna tattoo on a bald head.  I asked about it and said that this is something I would really like to have done.  I was told that they have a connection with a local artist that does it and they would be happy to connect us.  In fact, they were thinking of having their first ever Pampering Day event in January and wouldn't it be great if henna tattoo could be a part of that.  I said YES! It would be great and I would love to have it done.  

Fast forward to January 13th ... to Pampering Day and my first ever henna tattoo on my HEAD.  I was one of three people who got one that day.  It's takes about an hour total and it was a one of the most relaxing and anticipatory hours of my life.  The artist's name is Christalene and not only does she have an Australian accent which was lovely to listen to, but she is also a lovely person from her soul outward.  She's one of those people who you can't help but connect to.  The whole experience was just .... magical.  I got to see nothing of what she was doing until the whole thing was complete.  It was so fantastic.  I felt like I looked like someone getting ready to be in a movie.  As what, I'm not sure!  Some kind of wise princess or goddess or something, ha ha!


She asked me for one word



The inspirational artist, Christalene and me


 Tanner checking me out.  He was speechless and then just uttered one word ... "cool"


You never know what I'm going to get into next .... but it will be pretty hard to top this one!  Stay tuned .... I am determined to write another post much sooner this time.  I want to share what I've learned from my genetics testing.  Next time!






Sunday, December 4, 2016

WE'RE HALFWAY THERE

Welcome to the song you will be singing in your head for the next few hours.  
You're welcome!



On Thursday I had my third chemo treatment.  This one really felt like an achievement of some sort because I can say that I'm halfway to being finished.  Yahoo!

My brother, Nathan accompanied me for the day.  He is such a good brother .. Thursday was his birthday and he chose to spend his birthday day off with ME at CHEMO.  I mean, is that a sacrifice or what?  I didn't even have a special treat ready for the birthday boy.  Lucky for him an older feisty lady getting chemo had brought in cake for the nurses and they shared with him.  I was half asleep when this was going on but I came out of my fog long enough to mumble something like "awe, that's so nice."  Snooze.  
In all seriousness, I was so thankful to have my bro with me.

Here is a photo of the Great Nate hanging out with baldy:

  
On round 2 of Chemo Day I had my Aunt Sue with me.  I went right to my oncologist appointment where he promptly asked me "Did you get your blood work done?  I don't see it"  Oh!  I forgot I was supposed to do that first.  
No big deal, I messed up the order of things and that was forgiven.  

I was feeling well assured of the order of things on round 3 day with Nathan in tow.  I marched into the lab, went right to the desk and sat down in front of the nurse.  She said "Good morning.  Um, you're supposed to take a number and sit down over there."  Nathan is now snickering and shaking his head.  Whatever.  They took me right back, blood work done.  Now I lead Nathan out of that building over to the infusion center.  We get all the way to the door of infusion and I say "WAIT!  I'm supposed to be meeting with Dr. Weng first!"  And back we go back to the building that we just came from.  My brother says "Apparently, you really need someone with you that knows the routine."  To which I reply "It's called Chemo Brain Nathan.  It's a real thing.  You can Google it!"  When I finally get in to see Dr. Weng I tell him why I'm late and what I did and that I told my brother that I was obviously suffering from a chemo brain morning.  Dr. Weng agreed (of course) and said that if I wanted to get physical therapy for chemo brain he would be happy to set me up for that.  Yup, you read that right.  You can get physical therapy for chemo brain.  So good to know!  I told him that for now I had some plans to use chemo brain to my advantage ... like, telling Steve that my brain isn't working well enough to remember how to wrap presents.  And now my very own oncologist is the second man of the day to shake his head and laugh at me.

We had a fun visitor!  My friend Kristi offered to bring us lunch so she came in to make the delivery and visit with us for awhile.  She made us laugh with stories of her twin 8 year old boys shenanigans. I was having severe hair envy with her there so I told her I wanted her hair on my head.  Here is a picture of us being cute and here is a picture of Kristi's hair on my head.  LOL.  We had fun for this photo shoot!  Seriously Kristi, how did you get into the infusion center with a head of hair like that -- shame on you!  HA!



 Let me tell you about the pink box I'm holding in the photos.  Kristi's daughter Mackenzie made this amazing positivity box for me.  It is really special.  The inside lid has a quote "Difficult roads often lead to beautiful destinations" and together Kristi and Mackenzie made positive affirmations on little slips of paper so that when I'm having a low moment I can pick one out and feel uplifted.  I was having a particularly bad moment yesterday and the one that landed in my hand was "I am Powerful."  Instant mood change!  I am so thankful for the creativity and thoughtfulness of this 12 year old girl.  

Today is Sunday and I've spent the majority of the day on the sofa sleeping.  I did not have a good nights sleep last night and was having awful foot cramps and other strange neuropathy issues that kept waking me up.  The bad taste in my mouth is back in full force so nothing tastes good.  I'm supposed to be drinking lots and lots of fluids and it is HARD but Steve is on me about it which is good.  I was craving a milk shake so badly yesterday so Steve went out last night and got what he needed to make me one.  It was delicious ... finally something yummy!  He made me a peanut butter one today and it made me so happy.  So first I had my friend Cathy's "Survivor Soup" (she calls it Super Immunity Soup but I've renamed it because I can feel myself being healthy,  strong and surviving with every slurp) and then I followed that up with a milk shake.  Ya gotta do what ya gotta do!  My treatment hit me sooner than it has the last two times so I haven't been feeling well the last 3 days.  Maybe this means I will begin to feel better sooner?  That would be nice.  I'm ready!



Wednesday, November 23, 2016

THANKS-LIVING

So much to be thankful for this Thanksgiving holiday.  Well, for every Thanksgiving holiday actually.  But this year feels just a bit more "thankFULLie" (I just made up that word; kind of like my husband does in Words with Friends).  

I am really thankful to be feeling well for the holiday.  I will be able to enjoy my time with family tomorrow with energy and focus and I will be able to enjoy our feast.  One of the side effects from the chemo is that I have a dry mouth and nothing tastes good.  But in the last couple of days my taste buds seem to have recuperated a bit and things are tasting better to eat and drink.  AND it's a long holiday weekend that I look forward to having some fun with Tanner.  I plan on ThanksLiving-it-up all weekend long!

Some may look at themselves as unhealthy when faced with a disease...but I am still so very thankful for my health.  I have cancer but I am still healthy in so many ways and I still take pride in taking good care of myself to stay strong in body and mind and to do good things for my body.  Every good thing I put in my body and everything I do for my body feels like a big slap in my tumor's face and I love that!  Gives me a little surge of ninja power.  

I am so very thankful for my family, my friends, my neighbors, my acquaintances, Tanner's teacher and school, to YOU for reading this .... everyone I know.  Thank you from ALL of my heart to all of you who think about me, pray for me, bring meals, call me, text me, send me cards, send me gifts, come visit me .. oh my gosh just thinking about the outpouring of love brings tears to my eyes.  How did I get so lucky?  

Thank you so much loved ones.  I wish you a most happy, grateful Thanksgiving holiday ~ live it up!

*My Pop-Pop is an avid reader of the "funny pages."  For many years now he cuts out the ones he likes most or the ones that remind him of me and saves them in an envelope to give me when we see one another.  A couple of weeks ago I was so surprised to receive in the mail an envelope from Pop-Pop with the funnies.  This is the first time I can ever remember him mailing them to me.  It made my day!  Do you think I'm thankful for my Pop-Pop?  You betcha I am!  Here's a Thanksgiving related funny for all of you ....






Monday, November 7, 2016

HAIR I AM!

I disappeared for awhile .... so much has happened since I last blogged.  Instead of writing a long catch-up post I am just going to take some time to make some back track posts.  

So I'll begin with the latest and greatest of what is going on with me.  Today Steve and I went to my wig place together for "the releasing of my hair" (no kidding, that is what they called it) and my wig fitting and styling.  Another way to say "the release of your hair" is TO.SHAVE.YOUR. HEAD.  My hair started to fall out on Wednesday of last week.  First just in some strands here and there but by this morning literal clumps were coming out in my hands in the shower and on my brush.  Lucky for me that I have so much hair that even though I could tell it was thinning, there were no bald patches showing up.  Regardless of that, I was still pretty anxious to get there and to have my head shaved and be done with this falling out hair business.   

Bonnie (owner of wig salon) turned me around away from the mirror as she shaved my head.  She did not shave it down to the scalp to avoid any nicks.  The doctors don't want you at any risk for infections so you have to minimize any injuries no matter how small.  It was interesting to discover that I have two scars on my head!  I have no idea how or why I have these scars.  I texted my Mom to ask about any accidents when I was a little kid but she doesn't remember any reason that I should have scars on my head.  Of course now I am wondering if maybe, just maybe these scars could be the result of some drunken debauchery during my 20's (?)  Yes, I know .. I need to come up with a better story.  Or maybe there is a really good story here but I just don't remember it!  Obviously, I have brain damage and the scars to prove it.

Bonnie and her assistant Randi and Steve were all saying what a beautiful head I have, blah, blah, blah and then Bonnie turned me around to look in the mirror.  I had a very quick reaction of almost crying but I took a deep breath and the urge disappeared.  It's kind of fascinating really to see .. well, so much of your FACE.  That's the first thing I noticed .. wow, there's my face, my whole face and nothing but my face.  My head is indeed, well formed (thank you Lord) and it is small ... I have a small head.  Kind of always knew that but now there is proof.  Because I'm losing my hair it is patchy in places which is not so pretty but after my next treatment on Thursday I'm pretty sure there will be no hair-survivors.  

I wanted to just sit and look at my head in the mirror for (hours) but no time was wasted getting me acquainted with my new friend Miranda.  (This is what I have named my wig - Miranda).  Miranda is actually very pretty and I think I may go out with her more than I originally thought I would.  Steve likes her so much that he took us out to lunch!  I got the scoop on how to take care of her and off we went.  

I kept Miranda on my head the rest of the day until I picked up Tanner at the bus stop.  So I guess I had her on for about five hours and not once did it feel uncomfortable.  Tanner said he liked my wig and that it looked like real hair.  The minute we walked in the house he wanted me to take it off and show him my bald head.  He is fascinated with the head mannequin thing that Miranda takes naps on and only after investigating that and the wig OFF of my head did he really look at me.  He petted my head and said it was soft, said that I still had more hair than Daddy, gave me a big hug and a kiss.  No biggie.  Isn't he just too cool for school?  I love this kid.  

Last week Tanner asked me "Mom, when are you going to be bald?"  I replied, "well, soon I think because my hair is starting to fall out and in 5 days I'm going to get my head shaved."  He was quiet for a minute and then said "soon me and Lula are going to be the only ones with fur on our heads!"  Yes, laughter really is the best medicine.  And a person requires a lot of laughter when going through this fight.


Me and Miranda


"Make a muscle Mom!"



With these two by my side I can do anything!


Saturday, October 22, 2016

DETAILS

Several of you lovely people have asked what my chemo treatment days are and are wondering about the timeline for the whole process of getting to cancer-free.

My treatments are once every three weeks for a total of 6 treatments.  As of right now the dates for treatment are:

November 10th
December 1st (1/2 way there!)
*December 22nd
January 12th
February 2nd (Happy Dance Day)

*There is a chance we will back up this appointment until after Christmas.  I need to get a better idea of when my best days will be.  If this gets pushed until the 26th, the last two dates will change as well.  TBD

After my chemo treatments end I will have one month of recovery before surgery.  I do not know yet if I will have a lumpectomy or a mastectomy.  I will get more direction on this about half way through chemo and also depending on what my genetic markers are.  So let's say surgery will be somewhere around the second week of March.

After surgery I will begin radiation.  I am not sure when this will start as it depends on surgery recovery.  Radiation will be five days a week for 6 weeks.  

O.k. so here's the clincher .... with the type of breast cancer I have (HER2 Positive) I will need to continue with a regimen of chemo treatment called Herceptin.  The great news is that it's a targeted chemo for my type of breast cancer and is known to be really successful.  The not so great news is that I have to continue with this treatment until November of 2017.  And some good news - it's only a 30 minute treatment once every 3 weeks with low side effects.  

I CAN DO THIS!!  

Today was a good day.  I took Tanner to his soccer game and enjoyed being outside.  I am feeling a little low energy this evening and some indigestion issues but other than that, good!


SHINY, HAPPY NOTES (literally)


My friend Kristi delivered us a delicious dinner last night and also brought this super sweet note that her eldest daughter Mackenzie made for me.  And the whole family signed it. I think I've read it no less than 189 times since last night.  And I know I smiled and felt loved and strong no less than 189 times as well.  Thank you sweet girl.