My Amazing Support Network

Every day I am so amazed by the support I am getting from everyone both at work and at home.  I think it's true that you don't know who really cares about you until you go through something like this.  The ones who don't really care about you will disappear when a crisis occurs and often reappear when it's passed. I can attest to the truth of this concept first hand.  I lost a few friends through my first two cancer episodes.  It hurt initially, but looking back I believe it was preparing me for this - the last and biggest fight I'll ever experience.  Their true colors have shown and they are not here to make me feel bad.  I am instead surrounded by a network of friends who seem to get more involved in my life when I have a crisis!  How wonderful is that?

I want to thank my wonderful husband.  He's been there every step of the way through all of this.  I honestly could not have made it this far without him.  He tells me I'm beautiful all the time despite my scars and deformaties from past surgeries.  He is there by my side every time he can be and goes insane when he can't be there due to other obligations.  He listens to me rant and makes sure my prescriptions get filled.  He does all the dirty work behind the scenes that no one really sees.  He even helps with the yucky stuff like drains after surgery!   My husband is an amazing man and I am grateful for him every day.

Jesse has a friend down in Pearland who opens his home to us every time we come down for tests or treatment at MDA.  Chris has gone so far as to give us a key and let us stay even when he is not there.  When he is there, he is a wonderful host.  His entire family has been amazing.  His mother made me a pad to use in the car while driving back up after surgery.  His daughter had a crab boil one time when we were down there.  His youngest son entertained us on the back porch swing and rode 4 wheelers with Katie.  Without the use of his home, the cost of care down there would be a lot higher.  Thank you for treating us like family and opening your home.

Next is my mother.  When no one was else was able to go down to MD Anderson during the Sarcoma period, she was there.  She took precious vacation days off to make the trip.  She also helps us by taking Katie to school on the days Jesse has to work and she takes care of our pets while we are in Houston.  She lets me call and vent when I get frustrated with my doctors and she does whatever she can to be supportive.  She has also gone to appointments here with me when Jesse is unable to get off work or short on paid vacation days.  Thank you for being there, mom!

I'm really thankful for my manager at work and the things she has done to make this easier for me and allow me to continue to work without long periods of absence.   Without me even asking, she has arranged for me to be able to work from home.  I will still keep my cube at work and can come in when I feel up to it, but I won't be obligated and can work here on the couch in my pajamas on those post chemo days when I'm not feeling well enough to drag myself out.  If this wasn't enough, she went one step further and spoke with Jesse's manager at work (we work at the same place) and asked if it would be possible for him to also work from home when necessary so that he could be here to take care of me.

Another manager at work came by and told me him and his church were praying for me.  He asked if I would mind if he put together some kind of fund raising effort to try to come up with some funds to help when the medical expenses start to pile up.  How amazing is that?

I came home to find a care package one day from my step mother.  It contained a book about "what cancer can't do", a pen, a card, and beautiful cross with the pink ribbon in the center.  She's also volunteered to help in any way she can with Katie.  She said they will keep her any time I need to go to Houston and even offered to pick her up on the days I normally would to make things easier for me! 

My dad has smoked brisket, hot links, chicken, and ribs this week for us to help out and save me from having to cook.  My step mother has brought these over both times right off the grill and still warm enough to eat.  They were awesome and are all gone!  I never was a big fan of these items, but these were really good! My dad is also paying to have Katie's DNA analyzed.  This may give us clues in the future and help Katie avoid being the 3rd female in my dad's line to have metastatic breast cancer.  I do not have the BRCA1 or BRCA2 gene, but perhaps there is another gene they will find in the future that will link my case to my dad's biological mother.  If so, Katie's DNA will be out there and she will be alerted by 23andme of the discovery. Perhaps knowing this information will offer prevention, screening, or more targeted treatment options for her.

A friend I've had since elementary school invited me to go to the new Perot Museum in Dallas today.  I went with her and had a blast. By the time we got done, I'd almost forgot I had all this going on.  Things just seemed like old times again! I'm thankful for those who distract me from my disease and give me these fun experiences. It means a lot more to me than you'll ever know.  The gift of time and being in there in the moment with someone is one of the most valuable gifts you can ever give someone.  She also took the time to listen to me rant when I was frustrated and then checked up to see if I was ok the next day! Kim you are awesome!

Then there is my manager, again, and the vendor we do computer support for who got together and arranged for me to have a full hour on a flight simulator.  I support a flight safety school where the airline pilots go for required training.  Use of one of these machines typically costs $1500/hr.  Jesse and I will be going Monday morning.  An instructor will meet us and we get to try to fly a PC12 aircraft (picture below).  I'm thankful for not only the manager who worked this out for me but the desktop lead with Compucom, the FlightSafety International representative who I work with regularly, the instructor that volunteered to give me the lesson, and FlightSafety International for letting me tie up a $1500/hr machine for an hour.  I look forward to this on Monday!

Last, but definitely not least, are those of you who have read and commented on my Facebook posts or private messaged me to make sure I am doing ok.  I actually do feel better when I have the opportunity to talk about things.  I have a lot on my mind and sometimes it helps to just discuss it with someone to get it straight in my own head. 

Cancer can be a very lonely disease.  You can feel like you are alone despite all the people around you.  I know it's hard to know what to say or not say and people often do not know how to even start the conversation.  I've been on both sides, remember?  I was also once scared to talk to people about these things!  I feel terrible about letting my discomfort stop me now.  I wish I had made the effort, but I didn't know how much it would have meant.  I'm giving you the opportunity to know pre-cancer (hint, hint).  Most people with these types of things going on (I won't say all because every one is different) like to talk about it.  Pre-cancer diagnosis, I was always worried I'd do or say something inappropriate and leave the person worse off than if I had said nothing. Now that I'm on the other side, I realize it's the silence and avoidance that hurts the person much more than ANYTHING you could ever say. So put on your big girl panties, get out of your comfort zone and say hello to that person you know who has cancer!

I am so lucky to have you all.  Feel free to say hello or ask questions about things I have going on.  I may get emotional sometimes, but it's a good thing and helps me to get it out.  If you don't like to talk online, let me know and I'll send you my phone number(if you don't already have it).

Also, please, watch what you say that will be visible or audible to Katie.  I am waiting a bit longer until I have a little more of a game plan before going into what this cancer diagnosis means.  She knows the cancer is back and there will be treatment in the near future and that is all I've really told her so far.  Here in the next few weeks, after we have a better game plan, I plan to sit down and fully explain it all to her.  Please let me be the one to do it.  It could be very harmful for her get the information second hand.

I want all of you to know that if at any time the whole thing gets overwhelming for you, I'm still here.  Cancer does not change who a person is and make them automatically someone you cannot go to.  I will still be here for you.  If you need to cry or aren't handling the news well, talk to me.  Maybe we can cry together!  It might help us both!  Yeah yeah... I'm going through a bunch right now, but I always have time for my family and friends.  Even if I have to drag you along to a treatment session to do it! 

Everyone hang in there.  We'll get through this a day at a time.  Here's something for you to read if you want more information.  Great brochure from a group called METAvivor:
 http://mbcn.org/images/uploads/LBBCGuideMBCNewlyDiagnosed12.pdf