Tuesday, June 30, 2015

Things I cling to...

I guess i've really always been one of those people that seems to pay attention closely to some things. 

Facing the Big C the first time, I think my vision became even more in tune and now, well, I cling to things that can indeed give me some hope.

Yesterday, after a short walk with my mom and Little Miss, I arrived home to see this butterfly. It was beautiful and really was not into moving anywhere.  I was curious to see what it looked like and why it wasn't moving, so I tried to pick it up.

When I did, it opened its wings and it was obvious why it wasn't flying all over the place...so I thought. After a short time of me loving on this beautiful creature, it flew away completely on its own and never returned. This beautiful, broken winged butterfly did it. It was awesome! It restored my faith and indeed gave me hope. That, I will cling to.

Inspiration #6:
My uncle was found to have a cancerous tumor behind his eye ball in October. The eye was removed immediately and he was told that it was highly unlikely that it was an aggressive cancer or that it would metastasize. They were wrong on both counts. In March he was told that it had set up shop on his liver and was very aggressive. He was basically told to get his affairs in order. The only real chance he was given was a research study. He signed up. Upon getting there and checking in (in Pennsylvania. He lives in Ohio) he learned that he was part of the control group that would receive the current standard of care (which has a 6% survival rate) and that the treatment itself is immediately life-threatening. Again, a crushing blow. After 2 rounds of this treatment (over the course of about 6 wks) we received word yesterday that his tumor has shrunk by 1/2!!!! We are all amazed and so thankful. He will continue the treatment next week again and will continue fighting. His first grandchild was born the week before he started this treatment so his goal right now is to smack cancer down so that he can enjoy watching the little man grow up.  

Clinging to Hope!

Comic Relief, sponsored by Ron.

"What do you call a boomerang that doesn't come back?"

"A stick."

More hard stuff..

Really, I need to come up with a better post title.  The hard stuff thing is yucky and I'd like to move away from it sometimes.

The other day I sat at a doctor's office and read my description on the computer.
"Linda is a 42 year old pleasant woman with metastatic breast cancer..."
something about seeing it in writing...
That being said, at least they thought I was pleasant :) 

Right now I'm taking one day, well, literally, one minute at a time. I'm going to the initial appointments with my entourage and trying to digest all this insanity. Truthfully, they are doing it for me. Many times, I leave the appointment and they finish digesting and asking questions.  Sometimes, it's just too much for me to even comprehend. My emotions overcome me. I walk the hallways to decompress. Saying I'm grateful to have a personal entourage is not even close to the reality I feel.

The idea is to get all this information and have a plan to start shrinking this S%#@!

Three weeks ago, life was normal. Tonight I think about the fact that I have one day left of brain radiation to stop the madness going on in my head,I'm deciding when to have my hair buzzed because my hair is falling out in volumes, and I anticipate the rest of my appointments for the week. I felt bad for myself tonight for sure. 

Later this week I anticipate having a biopsy to confirm the specific kind of breast cancer (Yes, this is still breast cancer; it's now moved beyond my breast).
This MC is not a curable cancer (at this time anyway).  It is chronic, however it can be stopped and there are several avenues of hope. I plan on doing this with 100% of who I am, certainly not my initial life plan, but now my full-time job!!! 
A story like mine is definitely one I used to avoid; it would scare the pants off me. Now it scares the pants off me and it's all my story..what the heck? Talk about having to face my fears! There was 15% chance it could happen to me, 85% chance it would not. I did what I could to lessen that percent even more because I ate healthy, walked daily, tried not to create too much stress, blah, blah, blah. Hmmmmm, it's frustrating to say the least and causes me to say multiple f-bombs on a daily basis. It's absolutely surreal for sure and I apologize to those of you now freaking out because of my diagnosis...I get it; believe me! However, I plan on showing you all that you can still survive and live your life! I allow myself to get angry, but try hard not to get stuck there because I need to whip some butt!

Thank you from the bottom of my heart for the continued daily prayers, words of encouragement and just the outpouring of love...I feel it.

#5 inspiration: (please keep them coming)
I have a friend who was diagnosed with metastatic breast cancer stage 4 shortly after her son was born...he just finished kindergarten and his mom is amazing. She has 3 children and sometimes I think she really is superwoman. I know her for almost 5 years before I even knew she had cancer. She frequently did fund raisers for different cancer foundations, but I never realized she was a survivor and patient. There are good days and bad, but we all have those. 

And today's comic relief thanks to Ron:

"What happens to a frog's car when it breaks down?"

"It gets toad away."

Thursday, June 25, 2015

Hard Stuff...

The title of this post is a gross understatement of the reality I feel right now. The choice in having to deal with it...NONE! The choice with how I choose to deal with it, however, is something I can do. That, in itself, is ridiculously hard too! My fire is ignited every morning by so many, otherwise the spark dwindles for sure.

From the beginning of this, which was merely over a week ago, the guilt instantly overcame me because I knew it would have such an effect on all those I'm blessed to have in my life.  My first uncontrollable sobbing was when I uttered, "my poor babies", over and over again. As a momma, I can't even begin to comprehend my feelings, but this week my choice was to buy pool noodles to work out, you know, some possible aggression we may be feeling. (Rule: Not hitting heads; mine happens to be pretty fragile at the moment, in more ways than one). We are all learning to be a fighting family; we're going to do this hard stuff, even though we didn't actually welcome it. So far I think I've whacked things the most.  

I still have so much to learn in this life of mine and so I plan on sticking around for a while even if there are ginormous hurdles to climb in doing so. Thanks for believing I can do it.

For me, take care of this village that surrounds me.  Be kind, go the extra mile, support each other.  This is certainly never a comfortable situation. We are not professionals in the hard times of life. We have to stick together and do our best.

 Ignoring the hard stuff may really be the only thing not to do (but, boy I get that too). Get beyond the yuck because someone needs you. Take care of my village, I need them!

My brother has been sending me jokes daily. I look forward to the laugh each evening and thought I really should share the fun too, so along with inspiration, we have some comic relief thanks to my little brother Ron. 

"What did one butt cheek say to the other?"
"Together me and you...we can stop this s@#t!"

#4 Inspiration:
"The school librarian I used to work with was diagnosed with Stage IV breast cancer at the age of 50. I remember clearly because we share the same bday and she is 10 yrs older than me. She went to Boston for 2nd opinions and they didn't believe they could do anything different for her than could be done in RI. Well, she will turn 70 next month! She is a woman of faith and hope, which I believe helps her.

Tuesday, June 23, 2015

My best advice of the day...

Everyday I get the drive to do this thanks to the outpouring of love and support.  The best advice I received today was this:

"I think you should scream at the top of your lungs and cry your eyes out whenever you feel like it. It doesn't mean you're weak, it doesn't mean you're giving up. Those responses mean you're human, you're alive and very much in the fight."

And today's #3. I forwarded it to my hubby yesterday, with the email titled the "new us".I really was quite fond of the old us and not too much into change, but I know we can do the new us too. I can't imagine being able to do it with anyone else.

And thank you to my other friend for posting this on my page this morning. You're all fueling the fire deep within me. I can't even begin to to express my gratitude.

Monday, June 22, 2015

A new position once again...

My life has been altered without my permission. I have to admit I dropped multiple "F-bombs" during the past week.  This is just truly ridiculous and pisses me off in a huge way. How can one so on top of things be experiencing this? 

Tomorrow is day 5 of my brain radiation treatment but because it's only been a week, I continue to come to grasps with the entire situation and, truthfully, who knows if I ever will completely. THIS IS CRAZY!

Because I now have MC, I am forced to become a "Manager". Yes, I'll fight, but I also have to come to the conclusion that I have to manage the nonsense; it plans on sticking around.  Personally, I hope it hates my body and jumps ship. I've already had enough. 

The immense support during this nightmare is one of the many blessings.  I am loved, and there truly is no greater gift, and no greater motivator to get me to do this. 

It's often hard for me to believe that I can do this, but with the multitude of encouragement, support and love, I will.


And story #2:
From the cousin of my BFF
"I have been living with metastatic breast cancer (in my liver) for 6.5 years!!! I was stage iv from day one. I am working, finished my Phd 2 years ago, married, love being an aunt, and trying to enjoy every day!! Of course there are bad days, but I try to focus on the good days. Support around me is key and you have that!!"

Thank you Kristen for sharing...you are my inspiration!

Friday, June 19, 2015

A recipe to get stronger...

I had multiple tests yesterday to scan my body.  They were both mentally and physically exhausting, but the words of others got me through them and I slept peacefully into this Friday, ready to start!  

As I had suspected there are spots of MC in other parts of my body besides my brain.  The words I heard yesterday that I'm choosing to hold onto are "They are treatable."  We will specifically visit a newly recommended doctor next week who does not allow negativity to enter her office...right away, I'm sold, although I am the primary one struggling with that negativity right now. 

I'm working on this:

Unless living under a rock and never seeing the affects of metastasized cancer in your lifetime, then perhaps moving on with super optimism is easier.  For those of us all too familiar with it, how can it not be difficult to stay positive and stay clear of the terrible things that can happen? 

The worst case scenario of MC doesn't happen to everyone though and I'm now going to be giving a clear example of one story in each of my upcoming posts. I need your help.  Leave me a comment at the end of my post and share the story of those who live on with their lives with metastasized big C. I plan on being one of them and will plan on telling that story someday as well. 

#1:  1996 Lance Armstrong had testicular cancer that spread to his lungs and brain.  He won 2 Tour De Frances after that!  (Yeah, yeah, he lied and did illegal drugs to win, but who gives a poop...after living with the Big C, he is allowed to in my book.)

Thank you to all of you who continue to fill my heart on a daily basis. You are all literally providing me with the fuel to keep going and to do this. I'm so very grateful for all of you.

A special thank you to my BFF's B who shared Bebe with me today and went through the 3rd day of radiation with me.  

And this is today's recipe.

Wednesday, June 17, 2015

Trying hard to choose hope even in the midst of my worst fear...

It's hard to know exactly where to begin on a post that is certainly a downer....reality, but a downer. Perhaps telling you to grab your tissues is a good place to start.

I posted this on Facebook

"The best things in life are not things, it's the people who make you feel loved and cared for."

I was trying not to be evident in my post, but as the circumstance slowly spread, the responses started indicating that things in our life are not ok.

So, me being who I am, I feel the need to share what is going on with all who are part of my life and feel the need to know. 

On Monday evening I received news that confirmed one of my biggest fears. The unwelcomed visitor who rudely interrupted our lives starting at the end of 2011 did not get the message straight. It came back...the Big C has metastasized (meaning it spread), and right now we know for sure it is in my brain.   It's not exactly possible to get rid of metastasized cancer (MC) in my brain, but the doctors are certainly going to do their best to "cage the tigers". I have immediately started radiation treatment for that and hoping with my entire being that the tumors are easily tamed forever really.
 For the next few days, I will continue various other scans to see if the MC is anywhere else in my body. Apparently I wasn't quite rude enough to this visitor the first time. I plan on being even more forceful this time...Get the F*$% out!

By far the most difficult thing about this has been bringing the news to our children. 

When our 11 year old asked us if I was going to die, it pretty much ripped our hearts out.  We are unable to answer that question with any type of certainty. Never, in my entire life, has anything been so difficult and immensely heartbreaking. They certainly do not deserve this deal and in the conversation with our E, we were even comfortable using some bad words to describe the whole situation. After all, he definitely deserves that right. We also gave him permission to whisper in Momma's ear "kick cancer's ass"! How can I not be motivated by that? 

During the past few days, I have been humbled and continuously brought to tears by the endless support of love. I am blessed to have so many people literally do this S;%t with me. 

So, thank you from the bottom of my heart because truly

"The best things in life are not things, it's the people who make you feel loved and cared for."

Thank you for the 
-texts of support and i love you's
-the belief that I can do this
-helping with my children

Thank you for being a part of this horrific ride with us. It would not be possible to even attempt to conquer this situation on my own. It's actually very difficult for me not to feel terrible that so many people are affected by my struggle...ugh it hurts for me to see others hurt.  Boo Hiss to this!

I visited with my Memere today and found the time with her quite therapeutic.  Her ability to live precisely in the moment is something I'm definitely in envy of right now. 

I'm doing my best to take each day and go no further than that. I'm also continuously encouraged by my support system to have hope...I'm trying.

Tuesday, June 9, 2015

13 days from now...

Thirteen days from now it is officially summer vacation around here. To say I'm looking forward to it is a huge understatement.

I'm looking forward to spending much more time on my favorite spot at our house. 

I'm pretty sure it's Little Miss' favorite spot as well, specifically in the hammock.  She is currently there daily and sometimes I'm lucky enough that she will share the space with me.
 It's almost time to make our summer list.  Hey, really, we should all just start now.

"Summer is the annual permission slip to be lazy. To do nothing and have it count for something. To lie in the grass and count the stars. To sit on a branch and study the clouds."

Tuesday, June 2, 2015

A different kind of fight...

This past Saturday was the fourth Relay for Life event I have participated in since my Big C diagnosis in December, 2011. Team Bosom Buddies, started by my oldest brother, has now raised over $75,000. Our team is remarkably strong and supportive. Together we are making a difference in the fight. 

The Relay events have several activities, including a walk by the survivors and caregivers to start the night, music, and a luminaria ceremony just to name a few. 

Although it's been over two years since I've completed the treatments for breast cancer, I continue to work through things every day. One may assume that it came, I kicked its butt, and now I'm over it, but, really, it's not all that easy. 

These feelings and fears that I struggle with everyday became quite evident at this year's event when a young man told his story about his mom.  He started the story and it began the same as mine. I gulped a big lump in my throat and both my children suddenly paid close attention because they too could relate. The story was detailed and it ended with the biggest fear I work through daily.  His mom passed away after the Big C returned to her body ten years after she fought it off for the first time.

He gave a heartfelt and meaningful speech, but it was so hard for us.  My children were specifically affected by his words.  The beginning of his story was very much like their story and the latter part was certainly something that caused panic and concern with them and with myself. It actually caused an immediate panic and full-blown sadness with me. It was not exactly a comfortable situation, but my feelings were the real deal...

It was convenient to be walking since that generally is my coping mechanism through the stress and thankfully my family and friends were present and pulled me through.

 I did a few laps exhibiting the ugly cry and managed somehow to get over it and move on. I imagine I'm not alone because there are other survivors who must also experience similar fears. We feel blessed to have kicked the Big C's sorry a@$, but we also can't help but be overtaken sometimes by the fear that it will barge into our lives once more.

Although I am not fighting the Big C in the same way I once was, I am in a different kind a fight, one which is about moving on with my life as a survivor, facing the fears of the unknown, and also rejoicing in the gift of each day. 

Yesterday I heard this song for the first time.  It's my new favorite.


"Starting right now I'll be strong."
-Rachel Platten