Thursday, July 11, 2013


I read an editorial last week and it has stuck with me ever since.  I usually skip over anything written for the Huffington Post.  I tend not to agree with most of their writing, however sometimes they have cancer related articles that I enjoy.  

Nobody Shaved Their Head for Me

I battled cancer for a year, did chemo, surgery, radiation, the whole lot -- and nobody shaved their head for me. You know all those stories of people who get diagnosed with cancer and ordered to do chemo and their best friend jumps in and immediately says they'll shave their head with you? Stuff like that?
Well, that doesn't happen as often as you think. The one thing that has held true about cancer, during and after, is that it will leave you disappointed at some point by every single person you know. And I had no idea that it would change every relationship in my life the way that it did.
At first, there is the rally. Everyone comes to your aid, everyone cares. Everyone is sending stuff. Loads of packages arrive to your house and flowers cover your living room. Then you start treatment and things slowly wane. The texts and presents become less consistent, people go back to their normal lives and you trudge, seemingly unendingly through treatment.
An inverted figurative graph is formed: While the shock and awe of your diagnosis has worn off to those around you and they slowly return to normalcy thinking that you are ok, things for you as cancer patient have only gotten more difficult. And for you they crescendo and build up. Yes, treatment might be working, but you feel more and more miserable while everyone else gets comfortable with your status as cancer patient.
Reflecting back, I think I subconsciously started staging my friends in the same way cancer is staged. A Stage I friend is the best you can get, checking in with you a lot, offering support, honest support and just bringing you things even when you say you are fine. A Stage II friend checks in periodically and is that one that you can go to when you're feeling rotten and truly be honest with. A Stage III friend is on the periphery -- they know what you're dealing with, but they can't handle it themselves, so they treat you uber-normally. They're the friends you can go to when you want to feel normal, but you know they have no idea what you're dealing with. A Stage IV friend is the worst, as they have basically just checked out since you told them you were sick.
There are lots of variations here, of course, and Stage IIAs and IIIBs, etc. Some people are Stage I friends for a bit then fall to Stage IIIB pretty quickly.
If you are positive and put on a front to your friends, if you wear a wig and look 'normal' then often the perception of you is that you are fine and "a trooper" or some other form of a Cathy cartoon that is "hanging in there." In reality, continuing through cancer treatment just gets harder.
Then, it seems, everyone shifts their focus to start asking you when "you're done" or when you'll "be done" with this cancer stuff. But the truth is that you are never done. When you finish treatment, that is when things get even more difficult, in some ways, because you begin to try to figure out a few things, namely a) what the hell just fucking happened b) how do I continue a normal life now and c) how do I grapple with the notion of recurrence and every ache and pain sending one into an obliteration of anxiety.
And when you are done with treatment, that is when cancer becomes intensely isolating, because a notion of post-treatment care in our current healthcare paradigm is non-existent and everyone in your support circle is just glad you are done and wants to move on from the nightmare that just happened to you. And you want this so badly too, but unfortunately the cancer cloud looms heavy over you and you cannot simply forget and move on. It is part of you.
As my friend and young adult cancer advocate Kaylin Andres recently noted, we need to reframe our notion of cancer as part of life and not simply part of death. As cancer becomes more and more common in young people, we must begin to shift the dialogue to focus not on how to accept cancer as part of our lives, but how to stop denying its presence.
Whether you see it in my body or not, cancer will always be a part of my life. As patients and thrivers, we would love to be able to speak to those around us about our cancer without them looking at us with sad eyes and a sense of morbidity. We are afraid, but cancer is truly a part of who we are, physically and mentally, and we need to be open about that in our relationships and our lives.
Maybe whether people shaved their head for me is the wrong thing to focus on. Cancer can go into remission but it never goes away. Fortunately, the best friendships stay around too.
No one shaved their head for me. But lot of people did a helluva lot more than that.
By Erika Lade

I would not have written this any better.  It is so true.  Sometimes I look at it as a gift, Cancer has given me the ability to realize who I can and can not count on.  On the other had this makes me sad.  Before my cancer I did not see this as clearly and maybe worked harder at a non existing relationship.  I try never to focus on the negative, nothing good comes out of that.  I always think of what Monty Python  said "Always look on the Bright side of life".
I know odd to think of Monty Python but this song as well as Im not dead yet always pop into my head.  

Monday, July 8, 2013

The Buddy System

Maddie has a cd with some pretty odd songs on it, one is the Buddy System.  It talks about how two is better than one.  And what to do when you get separated from your parents in a store and so on.  Well on 5/5 of this year we adopted a landshark.  For my non-greyhound readers that is a greyhound puppy. They are called landsharks because they are absolutely crazy.  Maddie kept telling us her new dogs name would be Ginger.  So when we started our search for dogs we concentrated on red, hypoallergenic dogs.  We even filled out and application and wrote a check for a labradoodle (I never mailed it in)...  I caught wind that our greyhound group had a couple puppies.  I was emailed pictures and I showed them to Maddie and there you have it the little black pup was Ginger.  I am so glad she got to see this process and we spoke about adopting over buying.  She understood that these dogs do not have homes, Mommys or Daddys or even beds...We probably should have toned their needs down a bit since how she wants them all.
Here is a picture of Ginger about a week after we got her.  She is super sweet and a true landshark.  She will chew anything, chairs, walls, labels you name it she will chew it.

Shortly after getting Ginger well actually before I signed the paperwork for her Maddie wanted a second, why not TWO ARE BETTER THAN ONE.. we knew we would add a second we just wanted to get Ginger acclimated to our home a bit more.  Well that did last long because Ginger was having some major anxiety issues.  So we borrowed a friends foster.  "Zales" Now Zoie, is a great addition to our family.  Maddie is already talking about her third however Two is good for us.  On stormy nights there isnt much room in our bed once all our "girls" are in......
Here is Zoie on her favorite spot Our Bed!!!

Life after Cancer

It has been a real long time since I have sat down to write.  Im not too sure why not but Oh well here it goes.

I dont know how to answer people when they ask if we plan to have more kids.  Honestly most of the people asking have no clue what 2011 was like for me. We went to a furniture store and the sales person kept insisting on knowing of we planned to have more children... He was an only child and found it very hard as he is getting older to care for them and the assistance of a sibling would be great.  While our plan was to have more, it just hasnt happened that way.  So that has been my stock answer to most if they keep on top of it I then say I was sick and we do not know what the treatments have done to me.  I do not like to play the cancer card at all.  It isnt me.  I hate the look of shock and sadness when you tell someone or the million questions that come after it.  Oh well Im just not sure how to answer people.  Just to let you know we did not buy furniture from the pushy sales guy...

Thursday, August 30, 2012

I know you are reading..

I posted the link to here on Facebook the other day. I was hoping that by posting it people would read it, not feel sorry, however feel compelled to help me raise fund and awareness for this shitty disease. I know I used a bad word, I did it on purpose. I don't think people realize what this disease does to someone, their family and their body. I have heard from more than one person, "did you get the good one"?,it's not a sweater. "was it the real kind"?, yes lost hair, and body parts and had more surgeries last year than I had the prior 35.

I am walking in this years make strides against breast cancer for the Hudson Valley. Here is the link to my donation page, feel free to push me to this finish line...

Tuesday, July 24, 2012

So much...

I really have no excuse for not writing. Except that there has been so much going on that if I say down and wrote everything I may just explode. We have so much to celebrate however really do not feel like it.

This past Wednesday I saw Dr M. And everything looked great. I do not have to see him for another three months. He actually said "you are the picture of health." "if I did not know you I would never know.". Of course he does know me and has seen me topless so he is aware of last year. Last Wednesday came and went. I am pretty sure I can only blame myself however a little celebration should have happened, going out to dinner during the week is hard because of Jeff's schedule, however, nothing. Aunt Carol even forgot to ask how it was and she watched Maddie for me. Maybe it is just old news...

Wednesday, June 27, 2012

Need to get back on that horse...

Two Thursdays ago was pretty normal. We went to the gym and price chopper etc. all in all it was a good day. Maddie did not nap and feel asleep just before I was ready to cook. I figured I would give her a little bit of time.

I had some veggies i put in the over I roast and the rest of dinner was going on the the grill. I went out and lit it. Came back in house and gathered my food while I let it warm up. I put the chicken, peppers and mushrooms down and opened the lid. This is where my normal Thursday got a bit exciting.. My grill flashed in my face. I moved quickly back. I had my witts about me and before I ran in the house I made sure my hair wasn't in fire. I ran to the bathroom and saw my face very pink and my hair singed. I texted Dan and called Aunt Carol. I calmy said to her, I am going to need you to come down now. She said now, I just made a steak. I said yes now, I am sorry and told her what had happened. Dan said to get check by the ER. I was shaking and knew I could not really drive myself. So uncle Joel came to the rescue. For those of you that know my uncle know that he is not good with things like this. I am shocked he actually came into the er with me. I did send Jeff a text. I started it with Don't panic. I had not heard from him do I had no clue he was actually on the train on his way home. It's hard for most to understand. His day does not end at 5 or 5:30. His time to come home Changes with the day and it is never the same. So Maddie and I have a set dinner time and if he is home great if not we do a second seating when he is. Since I had not heard from him I didn't want to call and disturb him. I did call once I was in the car with uncle Joel. My nose and hair got the worse of the burns. My hair looks like I let Maddie cut bangs for me. And my nose is looking 100% better now. I do have pics but they are not on my iPad yet. I will update once I up load. Needless to say we did not have chicken for dinner we all ended up at Mary Janes for ice cream. Along the way aunt Carol picked up Emma and Timmy and Tracy met us at MJs. In the end it was a nice evening.

I did call weber, the service person came out yesterday and changed the manifold. The insides of my grill. One of my knobs was sticking and I did turn it on that day. I usually do not turn that burner on. The guy explained to me that to it was probably stuck in the ignite setting allowing a lot of gas to build up in the lid and when I opened it it flashed. I will be fine. I have more hair than I did this time last year and the burn was nothing like radiation. I took out chicken for dinner, unjust have no clue how I am going to cook it yet.