So where were we?

March approaches and I'm expecting a surprise guest while my husband goes on a trip to Bike Week in Florida.  He wants to skip it, but I insist.  He needs this break, he has been my rock so far and needs guy time.

To my big surprise my girlfriend from Florida has been plotting with Bob to stay with me while he is down in Florida.  She got the

raw end as it is freezing up here and it's warm and sunny down there.  We did get to shop while he was gone and got great deals on winter boots so its all good ;)

Lola and I enjoyed having another lady in the house.  My Flamingo ladies came over to visit before my bad days from chemo as well.  A great way to start the month.

We also went to visit my favorite shrine.  A little magic happening there ;)

During this visit is also the last of the AC, lovingly referred to as the "Red Devil", or by me as the Tasmanian Devil.  Imagine this twirling through your body killing cancer cells.

Phase one down, phase two starts in two weeks, weekly Taxol with Carboplatin every third week added because of the BRAC+ diagnosis.

Last of the third syringe going in.  

And........ALL DONE!!

All in all a very nice visit.  Thanks for coming Kathy 😘

Bob is back and I make my first true venture out in public.  Its the Annual St. Pattys Day parade on Bluemound.  Bob is part of a Drum and Piper group with the Tripoli Shrine.

We go every year, this year will be no exception.  Its been a week since the last AC so, while tired, I'm doing pretty good.  I even surprise myself and stay out all day and into the evening.  The couch is my friend the next day, but I made it through the whole parade day.  Boy times they have changed, usually the couch is my friend from a hangover ;)

March 17-On to a new adventure.  We start Taxol/Carboplatin today.  My daughter is my driver today since they are giving me benadryl first to make sure I have no allergic reaction to Taxol, a definite possibility.  Of course, today is the actual St Patrick's Day so of course I have to ask the nurses if they are going to tint our chemo green.  😝  No go.  No beer flavoring either.......

Benadryl in, and nap ensues.  Carbo in, then Taxol.  15 minutes of babysitting by my nurse with no allergic reaction, good news!  Onward we go.  Nap continues.  Good thing my daughter had plenty of work.  Another good thing, no more syringes, everything is in a drip bag thankfully.  No more chewing on ice to prevent mouth sores during infusion, yeah!  And a guaranteed nap every Thursday, thanks to benadryl.

The next two days are great thanks to the steroids. My girls are in town, we go shopping, get out and have some normalcy while Dad is out of town with his Highlander group.  By Sunday, I can't get off the couch again.  Here we go round and round.  A pattern has formed.  One or two good days, two bad days, two good days, then infusion.  Okay, for now.

March 27-Easter 2016, the first time I have seen some of my family members since I've been diagnosed.  I've had to be so isolated to ensure I don't get sick, or give sickness, that I haven't seen them.  Its a nice visit, and good to be with family.  The kids are fun to watch, and it's good to be around people.

I was also visited by a Easter Bunny from my work just before Easter (and St Pattys) bringing me cheer this month.  Gotta love them all.  I miss seeing them every day, its tough when that's what I've done for the last 23 years.  Their words of encouragement keep me going.

 

March 29-A visit with the plastic surgeon.  Disappointing and not at the same time.  Good news, my new breasts will be from my own body and from my belly.  Plus they will be at or near the same as they are now.  Tummy tuck and a boob job 👍

Bad news, with the rate of reoccurrance for IBC, they won't do anything until one year after radiation is over.  So no boobs for me for a year and a half.......should make Sturgis 2017 interesting. Anybody says show me your boobs might be in for a surprise when I throw them at them 😮

March 31-Last Taxol of the month, or not.  Two weeks after the Carbo/Taxol combo my white cell counts are too low to allow for chemo.  Unaware this was a possibility I am very disppointed.  Afterward, I find out this is common and chances are this will happen again during my last rounds.  Unfortunately, this means continued isolation to prevent the chances of getting any illness, as well as constant hand washing.  You never really notice coughing, sniffling people around you until you have to be worried about it.  And kids, forget about it, germ factories......

I do notice that I feel better after not having the chemo for over a week which is a nice preview of a few months from now.  Summer is looking better and better.  Pain I think I handle with meds after surgery.  Chemo just sucks.

On to April, and another month down.

I have returned from the land of the chronically whiny and coughing.  Went to the 50th bday party of our friend to celebrate his entry to the dark side of aging.  Finally starting to feel better and glad to be out of the house.

February 25 - Genetic results are back.  This is the moment I have been dreading.  I am BRCA2 positive.  Crap.  After an hour and a half with the genetic counselor, I don't feel that bad anymore.  But it took that long to get the information needed to make me feel that way.

The basic gist of the meeting was, for me personally it was good. Because I am also triple negative,  found it early, BRCA2 positive, all of this working together helps me to fight the disease and to come out with more positive results.

With regard to my daughter's, they now must be tested.  Its a 50/50 chance they too have inherited the gene.  They do not need to 'jump' on getting it done as they are in a very low percentage risk right now.  They do have to be more aware and need to keep up on their health.  We need to get life insurance on them, just in case, and then they will get tested.  Should they be positive, getting a decent life insurance policy at a decent cost could be a problem.

My prayer is they are both negative, but if they are positive as well, they will have all the information they need to decide how they can avoid getting cancer.  There are many options, some more radical than others.  And right now, time is on their side as well as research.  Since my mother got this disease many advances have been made.  As the years pass and science improves, including genetics, I am confident they will have more options.

My brother and sister must also now get tested.  Should either of them be positive, then their children will also need to be tested.  The gene does not skip a generation, so if my siblings are negative, their children have no more or less of a chance than anyone else of getting cancer.

We have finally come to the reason for me getting this disease.  It is up to me to save our kids from having to go through this.  If my mother would have been able to, I'm sure she would have done the same thing.  Unfortunately, there was no family history prior to her.  She was not a triple negative, which is what triggered my testing.  And genetic testing was very new.  My children, my siblings, and my nieces and nephews now have the opportunity to know in advance their potential for cancer, how to prevent it, and their doctors can help to make sure it doesn't happen.  In speaking with the geneticist, they can even take eggs from my daughter's, find ones that have positive cancer cells, dispose of them and ensure the gene ends with us.  Now that is elimination.  Expensive I'm sure, but to know they positively do not have the gene.  Wow, science.

When the gene testing first started they were testing three genes, they are up to 17.  Some of my results are included.  They are working at being able to change the H in my gene to an A, or whatever letter it needs to be normal, to change the outcome for someone like me.  Change the mutation to normal.   Nice.  Again, wow, science.

I am all about everyone getting genetic testing that has a remote chance.  If we can find out how, why, when, and prevent it, its worth it.  I would not wish this on my worst enemy.  I have given my blood to be part of testing and research, I have given permission for my records to be used, and I will continue to do so.  Being a rare breast cancer, with triple negative, and a BRCA2 if my case can help, I'm all in.  Seems if there is a low percentage of something, I've got it, so let's use that to figure this out.

For you science geeks.  

The percentage breakdown by age

Friday afternoon January 29th things changed.  Just before closing up shop for the weekend, I was told I was being put on sick leave.  Apparently, my compromised immune system and need to be further away from students, the sick room, and large quantities of people on a daily basis was a problem.  It would take negotiations and several weeks to come to the conclusion that long term disability is to my advantage.  My plans of staying actively working have now changed.  In the long run, it was the best choice as I will come to find out.  As the weeks have progressed the fatigue and various illnesses have proven to be more than anticipated which would have prevented me from being able to show up for work for days at a time anyway.  Its just a hard pill to swallow when these were not the plans.

Friday evening I let all my current troubles on the wayside and enjoy an evening of friends and family suport.  And boy oh boy, did they show up.  It was held at our friend and local business owner Kelly's Bleachers in Wind Lake.  A friend and former co-worker of Bob's, as well as cancer survivor, had t-shirts and stickers made.  Another friend had some local hair stylists come to shave heads.  As a bonus, WKTI was broadcasting and later a great country band would be playing Madison County, something already scheduled at the bar so an added bonus for attendees.

One brave lady ;)

Long time friends

My Flamingo girls

My girls

Two peas in a pod.

 

The organizers and "the Mayor"

There were many friends I haven't seen in a very long time that showed up, co-workers of my husband's and mine, family friends, former co-workers, strangers that were at the bar, family, friends, so many people it was humbling.  I could never thank the organizers enough for their efforts in putting things together or all that attended.  I did the best I could to get around to all in attendance to thank them for coming and to try and say hello.  Anyone that has ever hosted a party knows sometimes it's impossible to get to everyone, but you try.  If you are reading this and I missed you, thank you :)

Bald is beautiful.

The weekend is here and I am wiped out.  What a whirlwind.  The girls are visiting the rest of the weekend, time to relax and enjoy the family.

Monday morning, no work, I get to sleep in and watch Lets Make a Deal and The Price is Right.  Woo Hoo!!  The rest of daytime TV is useless.  Tuesday, same thing.  Wednesday, same thing.  Days are spent grocery shopping, house cleaning, movie watching, laundry, doing whatever I can to stay busy and not think about what's going on.    Since I still feel well it is hard to not be at work, it's what I've done since I was 18.   A cough has started to developed as well.

Thursday, February already.  Second chemo.  Visit with the doctor.  My cough has gotten worse.  I can take Mucinex.  No Tylenol as it can mask a fever, need to I know any fevers that my arise from chemo or infection.  2 of 4 red devils done, half way there 👍  Chemo affects, I have a UTI which I guess are common as you body is shedding so many cells and becomes ultra sensitive to everything going on.  I am dry, dryer than the Sahara desert.  There isn't enough water in the ocean for me to drink at this moment.   I have also started to lose my nose hair, so my nose is constantly running, nothing to hold anything in who knew.

By the weekend, I am no better than a 5 year old.  I am whining to the nurses office about the cough I have somehow contracted.  Isn't there ANYTHING else I can take.   By Monday the chemo is now kicking my ass and the cough and small cold are as well.  The couch and daytime TV are my best friend.  By Tuesday my hair is falling out in clumps, it's time to shave it off.  A bad week, just became worse.  Until Friday :)

A Cupid showed up at my door.  Made me cry and my day.    Cupid shot my heart with this beautiful blanket filled with hearts of messages of encouragement from my work family.  It couldn't have come at a better time as the week was getting me so down with sickness, chemo, and cutting all my hair off.  💘💌


It would be another week and one chemo session before I attempt to join the human race at a very dear friends 50th birthday party.