Search This Blog

Tuesday, December 7, 2010

If you think that was hard..........

Telling  your kids is even harder....

We were unsure what to tell the kids, There is not alot of information out there on how to talk to your kids about you having Cancer
Do you bring it up casually, "Hey kids, get ready for dinner, and OH by the way, Mom has cancer?"

Not exactly. My worst fear was to scare them that I was going to die, I really did not want that to happen
 I mean really, most people think cancer is a death sentence. Last thing I wanted to do was scare my kids.

We didn't tell the kids for a few days. Not because we didn't want to, but because   we just didn't know what to say. Manny contemplated not telling them at all "mom, why is your hair falling out?" was not a question i was prepared to answer with out them knowing what was going on,  and I wanted to know more of what was going to happen before we talked to them.

2 days after my diagnosis, I got a surgery date. 6 days later!! WHAT?? They still didn't get that I had a life to live that did not have time for this cancer business. but really I was kinda getting grossed out by this mass of freaky cells growing my my breast. I mean really, do you name it? do I have to pay extra for it on a flight? Seriously.  I think ill call my pet tumor Fred.

Not only was surgery coming up but I was still strongly nursing Liberty. Here comes a major decision. What do we do? I didn't know for certain that I was to have Chemotherapy , but we were 90% sure. So i was just going with the fact that Chemo  was going to happen.

I decided that before we made anymore decisions I would like to talk to my surgeon first.
I went in for my pre op appointment and. we had decided that a single Mastectomy was the plan of action. I really REALLY wanted to have both of them gone, not only did I carry the BRCA1 gene mutation, but for vanity reasons I did not want to be lopsided. I think at that point I was more concerned about HOW i was going to look after surgery. This is a HUGE blow when you are focusing on nursing and that bond and nourishment that you are giving to that baby is being TAKEN away from you.

I was not happy with the discussion on having just one breast taken. His reasoning was that there is a higher chance of an infection in the non cancer side when you have both taken at the same time.  I just had this feeling in my gut that this was a bad decision. I needed to have both breasts removed. I had this little fear in my head that I would have to do this all over again. My mom had her cancer return back every 5 years, and have to go through a mastectomy 2 times, 2 separate reconstructions, and all I could think of was her and her battle she fought. I did not want the same outcome for me.

 Now the next thing I did I am not necessarily proud of  but I was grasping at straws. Anger was starting to set in and I just felt I needed to take more drastic measures to get what I wanted. I knew someone who knew someone who worked for the Minister of Health. I had them suggest to me that I should write a letter to him and explain my situation and how desperately I NEEDED to have what I wanted. I explained that i felt unheard for 18 months about this tumor and now it is cancer that most likely has spread to my lymph nodes, and with my BRCA history and I have talked about the risks with my surgeon, I still needed to have it done my way. I did not think what would happen next to really happen

When I went for my second pre op appointment I got asked about the letter by the staff and my DR at the clinic............ In the letter I had mentioned everyone I had been in contact with since the discovery of my pet tumor FRED.
They wanted to know if there was something they did. And really the only thing they did was help me. They listened to  me, and they got to the root of the issue. I had no problems with the DR He is an amazing surgeon who definitely has a passion for what he does, and it shows with how he cares for his patients.

I just needed to be heard. I needed for once to have someone hear me. I had no idea the Minister of health would actually do something about my letter. I never thought I would even be taken seriously and now i had the feeling that heads were rolling over this............. And you know me ( well technically most of you dont, but well maybe by now you do LOL )  . I dont want to rock the boat.but I also didn't  want to die. and by now I just had to do everything in my power to get what I wanted.

They agreed to do the Bi Lateral Mastectomy. I was getting both breasts removed. PHEW I felt like I was making the best decision for me. That was one tactic I had to keep in my front pocket and use as much as I could the next year. It really is a good tool to have, not anyone can make any decision for you, Its yours to make when it comes to your health care. You need to be your best health care advocate in anything you do in your life and come out of that decision with no regrets.

So with that decided and surgery only days away I felt like I was in a whirlwind, Doctors appointments, blood tests, scans and x rays. The most interesting scan was the Bone Scan. They inject a radioactive ingredient into you and you come back alter and get a scan. I felt a little freaky getting injected with it. was I going to glow in the dark after?  And of course my biggest question was I able to nurse my baby? And honestly they did not have an answer for me, no one else they knew was nursing when they had a bone scan. I decided to not nurse that day.

By now it was time to tell the kids, i mean if we didn't tell them what was going on what were they going to think when i came home with no breasts, and where would they think i was going?
"oh moms of to a weekend spa, she will be back on Monday" Yeah I didn't think that would fly, " What breasts, I never had any before, your imagining things"
Yeah.......... probably not going to work.

We had to tell the kids.
And we had to do it now.
 I wasn't sure on what time of day to tell them. When they come home from school? Before they go to bed? I was trying hard to think of when would be less hard on them

We finally decided on after school. we sat them down in the living room. Told them we had to tell them something, and the first thing that shoots out of their mouth is " are you pregnant again?" Oh how I wished that was it. I would do anything for it to just be another baby. I would take having a baby 800 times again over this.

They were crushed. This was way worse to them than a baby,  when we told them I was pregnant with Liberty they told me I ruined their life. Funny now, they all love each other so much.
There was just silence. we talked about possible Chemo therapy. and surgery and  what changes would be happening.

One thing I always was sure of about my kids was I wanted to tell them the truth, and not to really sugar coat things. Kids are smarter than we think they are, they catch on when you tell them lies and half truths, I thought open, upfront and truthful to them was the way it was, that way they felt part of the whole decision making process to through this cancer journey I wanted to show my kids that I thought they were geniuses.

We told them that  I had cancer and I had to have surgery to remove my breasts. We went on to tell them that Chemotherapy will be a possibility and that it will make mommys looks change even more.

My children are old enough to remember what it was like when my mom went through her last rounds of Chemotherapy. The body changing stuff was ok to them. I wanted to prepare them as much as we could for the new bald breastless me.

It was hard for them, of course the first thing they think is that I am going to die. Flashbacks came of the day my mom died. It was a hard day all over again for all of us, But I was bound to show them that I was not going to die.

Life was about celebrating and cherishing, and that week before surgery was packed with cherished moments with my family.

"Life was meant to be lived"
Elanor Roosevelt

1 comment:

  1. Girl...I ought to know by now to grab a box of Kleenex before reading your stuff! You are amazing, and I'm loving reading about your journey. I am truly blessed to know you.