My sweet angel

My sweet angel

Monday, September 18, 2017

Scan Results and "What not to say to cancer patients 101"***UPDATED***

Well, other than my RBC count being a little high, my scans were stable this past Friday.  I got back to our poor island yesterday but am so happy to be home.  My next scans are in January.  I just feel so blessed that they keep turning out good.  I thank God for that.  But, I've written something similar to this before, and now I'm at my breaking point with it.   Remember, my blogs are not always rainbows and butterflies.

Those of you reading this that don't have cancer, I pray to God you never do.  I have an incurable disease that threatens to take my life daily.  Emotionally, that will take it's toll on you.  If you don't have cancer, please be respectful as you don't know what is going on in our lives.  We may not know what is going on in yours, but I do my best to be respectful.

I've had some things said that are sometimes meant well, but did make me want to punch the person in the throat.   Man I sound violent.   Well, here they are...just a few things you SHOULDN'T say to a cancer patient because we hear it all the time and a lot of them are BS.

1.  "You're going to be fine".....ummm, when did you become God?  Are you a psychic now?  This is not comforting.  This is aggravating.  

2.  "That's a good cancer to have"......ummmm, in what world do you live in that any cancer is good?   Mine is incurable.  I have not endured some of the treatments others have, but no cancer is good.

3.  "You're so brave", I'm not brave.  You may mean well, but to me, bravery is when someone chooses to take on something scary.  I did not choose this.

4.  "Mind over Matter" of my biggest pet peeves.  I can't count on my hand the number of friends I've lost to cancer who had a much better outlook on it than me.   Yes, having a positive attitude helps, but it won't save you.  It's insulting to the family and friends of loved ones who were lost, like their loved one didn't fight hard enough.  

5.  "Have you tried....."   I don't plan on it either.   I quit researching these long ago because it was a complete waste of time.  I'll go with the medical community, especially since I have Stage 4 Lung Cancer.

6.  "If anyone can beat this, you can"....really?  are we psychic again?  Telling me this makes me feel like a failure if it starts to spread.  Don't make me feel like a failure.

7.  "You brought this on yourself"....that one just gets a throat punch.

8.  "My grandma had your cancer.  She died"....ummmm ok.  Thanks

9.  "God doesn't give you more than you can handle"......where is that in the bible?  He wants you to lean on Him but you CAN get more than you can handle.  

Like I've said, I think most people mean well.  Most mean well.  Just wanted to emphasize that "most".  Some just think they know everything.  So, unless you have cancer, or another terminal disease, or are a caretaker, please refrain from the above.  You cannot relate.  Having cancer is a full time job.  It is physically and mentally exhausting.  You lose friends more than you can handle.   But I don't have to tell this to the people on this "Journey".  Which is another one that bothers me.  Journeys should be fun and full of travel.   Not sleeping the day away or getting overwhelmed with a few house hold chores.   

In the meantime, I'm going to keep my positive, but realistic attitude.  I feel that if you can't handle the nature of the situation, it's better if you move on, but don't insult me.

Thank you for your ongoing prayers and support.  I just know so many who are fighting for their lives and the last thing they need to hear are the above.  Emotionally, it takes it's toll, a toll that is so great, some days you can barely go on with it.


So, after receiving so many comments, here were a few that were requested.

10.  "God has a bigger plan"....ok.  Just because I believe this, doesn't mean you do.  This is where you don't want to shove religion down someone's throat.  Also, I don't want my daughter thinking it was God's plan to take me out.  I'm sure I'll learn everything on the other side, but saying this to people who are dying or just lost loved ones can have an adverse effect on their feelings towards God.  Because, what God would allow this to happen?  This takes a lot of time to get right in your head even if you are a religious person.  So, just consider who you're talking to when saying this.

11.  "You look great or You don't even look sick"....I don't mind this so much either because I'm a weirdo that loves the shock value.  I mean, a bit morbid, but I have to have a little fun in my head.  However, some people get offended by this.  Also, just because we don't look sick doesn't mean we aren't desperately fighting for our lives.  It's almost like they're saying "you must be doing well because you look so good".  Not always true.  Some days I can't even get out of bed, but when I do, I go around shocking people.

12.  "Never Ever Give Up"....ok.  Jimmy V's speech was one of the most inspirational speeches I have ever heard and makes me cry every time.   But, I think people take it the wrong way.  Some come away with it implying that if you stop the torture of treatment you are giving up.  One must consider quality of life over quantity of life.  This probably gets to the more religious of us, because we know, as Joan Fong said, "see you on the other side" is better than the torment we go through.  I think he meant it in a more mental sense.  Because sometimes, there are no more options for treatment or you want to LIVE the rest of your life.  That is what I took from his speech.  So, just consider who you're talking too when saying this.

All this being said, I'm sure you're like, "Well, what the hell do I say?"  I've linked a website to a designer of cards for cancer patients.   Stuff similar to this is good.    "I'm sorry, that really sucks" is good.  So here is a link to some cards....and I think most of them are spot on, and they are kinda funny.  Google is also a good place to look. Here is that link:  What we want to hear  Peace!

                                Just a few examples of when "Mind over Matter" didn't work.

Monday, September 11, 2017

Faith, Hope, and Love

There are many things that happen in our lives, beyond our control.  I remember 16 years ago, working in a doctors office and going to GA State.  I heard the commotion from the waiting room when the first plane hit.  I arrived in time to see the second hit.  That's the day I think I lost my sense of security and innocence as to what was going on in this world.  I was only 21.

I can't think about that day and not cry for all of those people we lost and the families they left behind.  I think a lot of us have forgotten our way.  Days like today help bring that back.  I was blessed to be able to visit the site Christmas Eve.  It was hard to look into the pits without crying.

You see, I woke up this morning, stressed about my house, stressed about scans Thursday, stressed about another hurricane coming.  Yet, these are material things.  What was lost on this day 16 years ago doesn't compare.

We all have hurricanes going on in our lives, but we have to remember that Love is greater and we will overcome.  Thank you Lord for sparing our lives, our material things, and everything you've given us.

Thank you all for your continuous prayers, please pray for scans Thursday and my friend who is not doing well still and all the people affected by Harvey and Irma.  I know it may seem like you've lost everything, but I still believe that people are inherently good.  I believe the country will come together to help those that lost all of their possessions.  I've added a few pics from St. Simons Website of the island.  We aren't able to go home until further notice, we had some damage to a vehicle, but not nearly what others had.  Schools are closed through at least next Monday.

Giving it to God.   God Bless.


Monday, September 4, 2017

The Good, The Bad, and The Ugly

Where did my baby go?  I can't believe she's growing up so fast.  I realized today we haven't had a picture alone together since June.  She loathes taking pictures with me.  In fact, she doesn't even like hanging out with me.  I finally got her alone today and we went out for a bit.

It was so nice to actually have a conversation with her and spend time with her alone.  We talked about school, friends, home and church.  I loved every second of it.

But, I understand now mom.  It's sad.  I used to do no wrong, be the center of her world.  Now, I'm lucky if she smiles at me.  She's at the age where she's into being on her phone, music (earbuds drive me crazy), sports, and friends.  No time for mama, unless she needs something.  But, like I said, I know this is normal.  I just never thought my little snugly girl would like being away from me.  I am blessed she's not at that bipolar stage yet, but she's teetering.  One minute she loves me, the next she's mad because I won't take her somewhere.

Yes, this is what I wanted though.  I wanted to experience all of the parenting.  The good, bad, and the ugly.  I didn't want to leave this world without having arguments over chores and grades with her. Call me crazy, but I needed this time and continue to need this time.  She is a total "daddy's girl" and I'm so happy for that.  Albeit, I am a bit jealous, but in the long run, the bond they have is so strong, it will see her through some rough days.

I hope she always knows that I know she loves me very much.  And I know this is a normal part of growing up, especially for girls.  I know all this, because I did all this too.  I'm sorry mom!  But, I'm sure you know that and like me, I'm sure you know that I love you unconditionally.  My love for Karley is greater than I can ever put into words, and I know she loves me right back.

Thank you for all of your continuous prayers for not only me, but my friends.  Some are not doing so well.  This roller coaster never ends and I'm so afraid of losing someone really close.  It's harder to sleep lately.  I've just been so tired but can't sleep.  I pray for strength from God for all of this.  Also, I have scans Sept. 15th so prayers are so much appreciated.  This is the first time I've gone longer than 3 months without a scan.

Sunday, August 13, 2017

The Butterfly

Last Sunday, we arrived home from a few hours at the beach and a large and exquisite butterfly was waiting in our bush.  Ashleigh captured a picture of it.  It flew away but came right back.

In early Christianity, the butterfly was a symbol of the soul.  Its unique lifespan has had different meanings to different religions and parts of the world.  They appear to dance when fluttering around, reminding us not to take everything so seriously in our lives.  They remind us to get up and dance.

The lesson of the butterfly is to let go of old behavior and expand into a new level of existence.  It is a reminder that our current reality must be experienced for us to grow.  It is said we are to embrace these changes while keeping faith in the end results.  The old life is gone and a new one has begun.

Around the world, people see the butterfly as a sign of endurance, hope, change, life, and resurrection.  All of these things are just so beautiful and the fact that maybe one of our friends came back to visit, is somewhat bittersweet.

Today is hard day for my friend Arash and his family as they celebrate the life of Molly Golbon.  She succumbed to this awful cancer a few weeks ago.  We've been praying for strength for her family and friends.

Today is also my dear friend Kelly Shannon's birthday.  Unfortunately, she is still in the hospital in need of prayers.  

I feel blessed that I'm doing well.  And I'm hoping the butterfly was there to let us know that Kelly is going to be just fine.   We don't take anything seriously when we talk or are together.  She is so silly, she knows how to dance, even in the darkness.

In other news, Ashleigh started working, Karley started 7th grade and Livi 8th.   I still love Jesus, my friends and family, and tacos, and the world keeps turning, no matter how bad things get.  It's not going to stop for you, just keep faith in the end results.  I was given 12-18 months to live, and though the road has been tough and I've had so many changes, I'm still here.  I may not be prettier on the outside for sure, but my soul has changed.  It is kinder, and I'm so grateful for that.  Oh, and I've learned to dance in the darkness.

Thank you for all your prayers for not only myself but friends and family.  Arash's family and Kelly's family really need them now.  

Ash at work

Kelly silly