Negative!!!!!

Last week I got a call from the geneticist saying that insurance took two weeks to approve the genetics testing she ordered and as soon as she got the results she would call again, but it might take 2-3 more weeks now. 

Her office called yesterday...

I am NEGATIVE for the "cancer" gene or BRCA.  Meaning the reason I have cancer is not hereditary, it was just my luck of the draw - a normal percent of the population.

A lady that I sometimes talk to while getting treatment told me that she and 9 of her 10 siblings tested positive for the BRCA gene and that meant they had a 70% chance of developing cancer sometime in their life.  Scary.

I am so relieved!  Great news for my brother and sister and for my kids too.

Yeah for being Negative!!


Some other happenings:

I had a heart scan yesterday to compare to the one I got before chemo started, I should find out those results next week.

I met with the radiation oncologist - he seems like a nice guy.  He wants to start radiation as soon as possible.  Probably in January after I have healed 4-6 weeks from the 1st surgery.  Radiation will be everyday, 5 days a week and I will need between 28 and 35 rounds.

I still need to meet with the reconstruction surgeon and have the pre-op appointment with the general surgeon.

Surgery is scheduled for December 2nd.

I am really looking forward to November.  Only one little chemo treatment and 3 doctors appointments! 

I am hoping by Thanksgiving my taste buds and stomach will be healed and can enjoy the holiday.

Sorry

I apologize to everyone.
Every morning when I get up I have a list of things I would like to get done.  The mornings go by so fast and before I know it, I need to start the afternoon routine.  
I am already so tired, it usually comes down the list or taking a nap... the nap always wins.
I feel years behind in all the crafts, picture taking, scrapbooking, and organizing.  
I need to be better at updating the blogs, returning text and phone calls, and sending out thank yous.
So the point of all this -
I just want to let everyone know how much I appreciate them, and while I might not get to it today or tomorrow, I will soon-ish.

Still coming -a post on the last chemo treatment and party!

I did not write this, it is from another blogger.
I figured I needed an update,
but I wont have any new news until later this week so...
I feel like this a lot, plus a few other things.



**************
I had chemo this week, on Monday. As usual, I've been in a type of fog all week. My mother-in-law is here visiting, and asked me to describe it. She wanted to understand what I was experiencing, and, by extension, what my father-in-law might have experienced when he was being treated for pancreatic cancer.

I struggled for the right words, but came up with this: "I just feel like my head is in the clouds."

It's like my thoughts are fluttering types of insects now, buzzing all over the place without ever standing still long enough for me to grab hold of one. As chemo week ends, it gets slightly better, but I'm not sure I fully recover between infusions.

And I struggle with how to manage my emotions, how to answer difficult questions, how to be a more present parent.

After chemo on Monday, I thought I could take Quinn and my mother-in-law grocery shopping with me, so that Chris could get some work done. And I don't know if Quinn is going through a growth spurt or this is just him being three or me getting chemo, but mid-afternoons have been rough for us lately. Like he needs a nap but the best I can hope for is some downtime in front of the t.v. for an hour. 

So pumped up on steroids and not yet starting to feel any side effects (I didn't think), I attempted to take my 3-year-old to the grocery store. It was exceptionally crowded at Trader Joe's, and I tried to convince Q to sit in the seat of my cart rather than get his own cart -- those miniature ones that TJ's offers for kids, which are such an adorable idea in theory. But Quinn would not be deterred, and I didn't think I was up for the fight. I told him he could have his own but he had to stay right next to me. He said he would.

I can see so many of you with kids already know where this is going.

First thing inside, right next to the salads, as I was trying to navigate the limited space between the employee restocking shelves and the elderly couple in front of me, Quinn started ramming his little mini-cart into my ankles. To his credit, he was staying right next to me. "Please stop, buddy," I asked him gently a couple of times. He didn't. My ankles were taking a beating. "Quinn, if you don't stop, you're going to have to sit in my cart," I reminded him, my voice getting more stern as I got more annoyed.

People were starting to stare at us. My son had already turned this into a game in his head. (He told me later he was just trying to be silly.)

I couldn't do it. Not on steroids, not after chemo, not in a crowded store. So I picked him up -- at which point he started screaming and kicking -- and said nevermind, we were going to skip grocery shopping that day. He kicked a shoe off in the parking lot on our way back to the car. A stranger kindly picked it up for us. He refused to sit in his carseat. It was close to 100-degrees outside, and I was out of breath from the walk to the car with a flailing child in my hands. I was also out of patience. He kicked me in the ribs as I tried to wrestle him into his carseat.

Nearly HALF AN HOUR went by. He was screaming, I was crying, cars were lining up waiting to pull into my spot as I tried to wave them along. I called Chris, who says I was so hysterical he thought I'd gotten into an accident. And then I growled at Quinn in a voice that sounded (even to my own ears) like I was possessed to GET IN YOUR DAMN CARSEAT. He finally relented. 

Thank you, chemo and steroids, for making me realize that I can, in fact, growl at this three-year-old (in front of my mother-in-law, no less). This is not the parent I want to be.

We both calmed down on the ride home, and we talked about what went wrong. Quinn and I promised each other we'd make the next day better (and we did). 

This, after my nurses cut my steroid dose in half a couple of sessions ago so that I would have less emotional reactions on my chemo weeks. The flip-side is my chemo side effects are bigger and badder, and I'm pretty certain I still have 'roid rage. 

I have felt terrible most of this week, because that's what chemo does with less medication to offset it. A doctor I follow on Twitter suggested asking my oncologist about not taking steroids at all, to take the emotional effects out of the equation. Or it could also be that, after seventeen months on this drug, its effects are building up in my system and this is just the way it is.

Fast-forward to this morning. Quinn woke up next to me (as he is wont to do; he inevitably sneaks in at some point in the middle of the night), and sweetly asked for a hug. Then we had this conversation: 

"Mommy, why are you a little bit sad?" I hadn't been feeling a little bit sad, I didn't think. Nostalgic, if anything.

"Because you're growing up so fast, and I want to remember all of it," I said and smiled at him. 

"Well, I'll remember it!" he promised. Then, this zinger: "Mommy, are you dying?"

I hugged him tighter so he wouldn't see the tears that immediately came to my eyes, the emotion that made me feel like my chest might crack in two. "Not anytime soon, honey," I told him.

"I want to remember when you die," he said. Then, "What does 'dying' mean?" Why did we have to have this conversation at 7:15 on a Friday? 

"It means when someone's not here with us anymore," I tried.

"Oh." He thought for a minute. "But I want you to stay here with me in this house forever!" 

"I want to, too, buddy. I'll stay as long as I can, okay?"


Man, it's been a long week. Here's to easier conversations and fewer side effects and being a more mindful parent in the weeks ahead. Other parents, how do you talk to your toddlers about cancer? How do you manage your side effects with children around?

*****************

The steroids don't really effect me like that, for me it is more tired, less patience and painful side effects.  On a more positive note...

Low

Wow.  It has been a while since I have posted any updates. 

I have been struggling a bit with - well everything. 

The side effects are really hitting me hard.  They are cumulative with each treatment and being almost at the end, they are pretty bad.

My red and white blood count was low last treatment so I needed to have a blood transfusion - 4 hours and 2 units blood.  I thought it would make me feel a little better but nope.   And to be honest it really gave me the heebie-jeebies watching the blood drip through my IV line.

This week I also got tonsillitis.  I had to go back in to the doctor to get more meds and get IV fluids, because I was dehydrated. I also had a temperature that had the doctor worried.  He told me to monitor it for the next 24-48 hours and if it didn't go down the medication they would need to hospitalize me.  Luckily the next day it  went down.  Between the side effects of a big chemo treatment and being sick, I was down and in bed for the better part of a week. 

Last week I met with the doctor who will be doing my surgery.  I was given a few options but we cant make any final decisions until the genetics testing comes back the end of next week.  I didn't get the news I wanted to hear from the surgeon and now I am tore as to what the best option is.

With each new step it brings on a whole new set of fears.  It is easy to talk about it in the future tense but when I have to face it, I am really scared. 

I also had an appointment with my oncologist.  For some reason I thought I would not need radiation because the cancer had not spread but he thinks it is my best chance to get rid of the cancer once and for all.  How can I argue with that?   Another fear to overcome.

So what is next.

Last big round of chemo on the 20th.

Wait 4-6 weeks to get better and my body to build back up its immunity.

First week of December - surgery.

Radiation.

Another surgery.

Possibly another surgery.

For now just waiting and worrying....