Merry Christmas and A LOT to catch up on

A lot has happened in the past couple of weeks - Janet has been given more attention than she deserves.  My neuro oncologist, Dr. Waghela, referred me to go to a radiologist...AND I DID NOT LIKE HIM!  But just so you know, I LOVE HER!  She is so kind and will answer all my stupid questions without hesitation.  I was just told that I have cancer and now this radiologist is telling me he recommends no treatment....WHAT!?!?!?  I HAVE CANCER AND YOU WON'T TREAT ME!  And when I asked him, his answer was stupid - because we don't.  That doesn't make sense to me - make it make sense to me.  Guess what, he didn't.  I left angry and frustrated.  My daughter has 1 parent left and this man won't treat my cancer.  Luckily, I am surrounded my a TON of family and friends in the medical field that helped me wrap, what brain I have left, around the fact that surgery is treatment.  But until I get the results from the "further testing" and another pathology report, I will not breathe a sigh of relief or relax.

Then Christmas happened...I was able to go down to Houston (Mom was so kind to drive me - Miss Daisy- and Jordy) and spend it with my brother Scott's beautiful family and my Aunts and Uncle.  So much Joy and Laughter and Love; I miss holidays in Houston.  Ever since we had Jordan, we kind of stopped going down there; I was so excited to be back.  Thank you Houston Klan for hosting.  I was so mad that I spent most of the time tired...I hadn't been in my Aunt and Uncle's house but 5 minutes and I was soberly passed out and drooling on the couch!  Damnit Janet - this is what I had been looking forward to since Graham's untimely death and you are making me sleep and making me sober on a holiday!!!  I still managed to wake up a bit to party some, but not like I usually do - I like to play with my child and nieces - didn't happen; I love to talk adult talk with my family - barely happened; a weird Joy in my life is to clean kitchens - barely happened; but I did get to see everyone. They say it's the Anti-Seizure med KEPRA that I am on that is making me tired and not feel as well as I should.  I get to go see that doctor January 4...fingers crossed he can help me because I HATE NOT BEING ME!

My amazingly talented brother did heal me of all the annoying neck pain I have been having since surgery - oh the relief to turn my head and see something!  I went down to Houston thinking I was now 90 years old...but after hanging out with my sweet 1 year old niece...I might be 1 again.  I swear, any activity makes me tired and out of breath, I'm only hungry for what I want to eat, I'm cranky and tired and need naps...so even turning my whole body to look left would exasperate me.  Thanks Scoot for eliminating that annoyance!!!

As we left for Houston, apparently Dr. Waghela called and my full pathology report was back...but of course my phone froze up and I couldn't answer.  So I had to wait 5 days until their offices opened back up to find out if Janet had any margins, mutations, or words I can't say let alone spell.

I spoke to Dr. Waghela today...no mutations, negative margins (meaning complete recession - tumor was FULLY removed- YOU ROCK DR. MEYRAT), again - more words I have no clue what they mean let alone spell...my risk factor did go up a bit, but I do still have some positives working in my favor.  So as for right now (drum roll please)...NO TREATMENT EXCEPT MRIs EVERY 3 MONTHS!!!!!!!!!  And when I asked Dr. Waghela why I have cancer and no one will treat me, she actually explained it to me WITH examples.  She also told me that this is a normal feeling to have and that most patients that have a low grade tumor like me, feel this way.  If Janet does come back, her first line of defense will be Chemo - this excites me because she will treat me, she just doesn't do radiology, and I LOVE HER, so I won't have to go back to that radiologist I don't like!  

I, for the first time during this hell hole, actually feel something positive.  I am so thankful for her and her explanations.  So I will only change my diet, makeup, shampoo/conditioner, and a few other things. 

Thank you so much for all your continued positive thoughts and prayers - they are working still...even after a year and a half.  And now with my own personal Angel in Heaven, I think things are looking up.  I told Jordan that I didn't have to have treatments because for now, Janet is gone, but Mommy is going nowhere.  Her smile and happy tears, she finally breathed after a month.  My sweet little girl.  She is so brave and strong.

MERRY CHRISTMAS AND HEARS TO A MUCH BETTER 2017!

The Why Me Question

I have never been a "why me" person and Graham never was either until the very end.  So why would faithful people who always looked at the bright side of things change?  I think I have it figured out....because we had it all...the dream or fairy tale everyone wants.
We were madly in love with a trust between us that most envied; Graham was finally healthy and we were doing anything and everything to create magical memories around the globe; we have a BEAUTIFUL, SMART, FUNNY little girl who can and will conquer it all, we had just bought our "forever home" in a neighborhood storybook writers dream of, and both of us loved our job (that might be the rarest of all).  And then our mountain came crashing....Graham became sick and passed away...and now me.
Today I was diagnosed with a Grade 2 Astrocytoma brain tumor.  People keep telling me "Yay! Best news ever."  I don't get it...it's still cancer.  I have brain cancer.  My daughter just lost her father and now she gets to watch her mommy battle brain cancer - as if ADHD didn't mess my mind up enough. Damn-it Janet!
However, I do LOVE to hear the woo hoos!  Because that means it is good.  I am the only person in my immediate family that is not in the medical field (dad gum blood got in the way for me) and all of them agree - woo hoo!  And that means the world to me.
I can't sleep, which makes the mind wonder, but it actually did me good tonight.  I have an epiphany.  Dr. Meyrat, my neurosurgeon, was highly aggressive in the surgery and got all of Janet.  Now, all I have to do is train the brain I have left to think about all this radiation or chemo I might get.  Please DO NOT correct me if I'm wrong - what I don't know, shouldn't hurt me - but I'm going to start thinking of the chemo and radiation as medicine (you know, like an antibiotic) to make sure Janet and her stupid little star like fingers never come back.  I will be here for my daughter.  So FU Cancer!

Damn-it Janet

It was asked of me the other day, by several different people (mom, Jordan, friend), why don't you name your tumor?  My reply - that sounds dumb.  But after thinking about it awhile, I would love to give this crap a name - to blame something.  So, I named her Janet - Jan sometimes for short...and I hope I don't offend anyone, it's only because it rhymes with damnit and damn.  So as I pick up a recipe for the 10th time and for the 10th time I forget it's in my hand, I can proudly yell, "Damnit Janet! Stop making me look stupid in front of my friends."  And then laugh at myself as other's are wondering if they should up the psych meds.
Still waiting on Thursday for the pathology report!  Then I start checking down all the other doctors appointments.  Praying for negative and positive outlooks!

Weirdest Side Effect Ever!

So with a scoop of my brains gone, swelling around the area in question, and pain meds that make me loopy - I have some very interesting things happening to me right now.  1....the itching.  Apparently I am allergic to HydraCodene - and I get the itches where I am clawing bruises on my body.  Thank goodness for some good Benadryl.
But the weirdest side effect...I don't trust myself.  I don't have the "full memory" of trusting myself that I am where I think I am...case in point...bathroom.  You know that dream you may have that you have to wake yourself up to make sure you are on the toilet and you aren't "relieving" yourself in your bed???  It's the exact opposite.  I do not trust that I am in the bathroom.  I am so comfortable on the pot that I am trying to wake myself up to make sure I'm not a bedwetter!  I actually woke Jordan up last night so that she could double check me and make sure I was in the bathroom.  She laughed her butt off the whole time- I'm sure she will never let me live this one down.  And I hope she doesn't, because it's pretty darn funny.
I am at a point that I am restless, cabin fevered up, and feeling so worthless - I can't do anything, and that is not something I'm programmed to be able to do.  I need movie suggestions....can't read, that hurts the brain.  Can barely work on projects - I get so flustered and frustrated because I literally can't do what I want.  Looking forward for the appointment in 6 days - I would REALLY like a break in this nightmare and not have to do chemo or radiation...it almost sounds too good to be true.  But a lady can dream, right?
I'm missing Graham's comfort right now - he always knew how to hold me and tell me that it will all be ok, and I believed him.  I do feel his presence, which is very reassuring...things ONLY Graham knew about and could do are popping up.  Glad to know that he is here with me in my darkest hour.

Nicholas Sparks Couldn't Make this Shit up!

If it wasn't enough that I lost the love of my life and Jordan lost her Daddy 5 months ago, let's throw in a massive headache that leads to seizures, briain tumors, and pending pathology reports that all docs are predicting Brain Cancer for the mother.

My heart continues to break for Jordy....this past year she watched her Daddy exemplify the best fight of anyone's life and now she has to watch this for her Mommy too.  Both with her Mommy not being able to be there 100%.  I continue to be so grateful and indebted to of our amazing support system.  Seriously, everyone of you that even makes a thought, prayer or kind word to either of us have shown what it means to be a great friend and a true supporter of an uphill battle.

I am a true believer in Silver Linings...I get a new haircut that I was always too chicken to get.  I get to have my Mommy stay with me and my bubbies to randomly come in and check on me.  I'm a lucky gal.  Oh - and we've been eating cupcakes for breakfast.

Thank you again for all your love and support!

BEST SURGERY PRESENT EVER - Don't you think "Scoop" and I look alike with our cute bandages?

Your Uncle Jacob...

·      Graham

o   Met in April 2006 – Capital One

§  Opening a branch together w/ another close friend Jarrod

§  Coughing fits and found out about CF

o   Carpooled together

§  Drove me absolutely crazy – seemed very negative

o   Did not sugar coat it

§  Told our managers their idea was absolutely horrible

o   Grew closer

§  We became great friends

§  Played golf

§  Went to the lake

§  Changed the way I laughed

§  Asked me to be in his wedding

§  Process of having a baby

§  My Engagement

·      *thong story*

o   Sick Pre-Transplant

§  O2 bag

§  *Golf handicap story*

§  Jarrod and I researched donating a living lung when he went on the list

o   Getting the calls

§  Stress was unbearable

§  1^st call came while we were driving home from the lake

§  2^nd call came but was turn around quickly

o   3^rd times a charm

§  It was late, maybe 3am when I got there

§  He made them wait until I got there

§  Color Board changed Purple to Orange

§  Prayed all night

o   Recovery

§  He sent me pictures of the swelling

§  Long recovery

§  In and Out several times

·      Worried us about the success of the transplant

·      Problems were early and everything got better

o   Living life

§  4.5 Years of healthy fun

§  Soccer, Working Out, Golf, and Gaining Weight

·      *Golf power story*

o   Passions

§  Family

§  Erin and Jordan

§  Friends

§  Work

§  Coaching

o   Getting Sick

§  Came down with a funk

·      Thought nothing of it

§  Stayed sick

·      Felt that something else was going on

§  REJECTION

·      Horrible news

§  Continued the fight until the end

o   Remembering Graham

§  We all have our stories

§  Share them with each other

§  Keep them close to your hearts

§  Cherish them

§  Graham touched so many of us in so many ways

·      *insert a “Don’t touch me there, you’re not my daddy.”

§  Remember him as a good man

·      A family man

·      A funny man

·      A generous man

·      A positive man

·      But most importantly

o   A fortunate man

§  Historically, children w/ CF died as infants, and as recent as 1980, the median survival was less than 20 years.  Today, it has reached 37.5.  Graham was 37.75.  Always above average! Fortunate!!!

§  He married a strong, beautiful, and loving woman.  Fortunate!!!

§  He wasn’t supposed to be able to have a kid.  He found a way.  Fortunate!!!

§  Look around.  Look at how many people were affected by him.  Who has this many friends?!?!  Fortunate!!!

§  Beat the odds.  50% of Lung Transplant patients don’t make it to year 5.  Fortunate!!!

§  He got a 2^nd chance at life.  Fortunate!!!

§  He got the chance to live like he was dying!  Fortunate!!!

§  Take comfort in knowing that though he is gone today, you will meet him soon enough because this life is but a vapor compared to the eternity we will all spend together in Heaven.

Jacob always was negatively influenced by this silly man!  Then again - Jacob did introduce Graham to X-Box - ew.