Monday, July 5, 2010

Dodging bullets

I’ve read the last CT report myself now. It's not good. The original nodules “decreased in size and/or conspicuity compared to the last CT”. I take that to mean they might have decreased in size, or they may just be inconspicuous at the moment – like they could still be there exactly the same and are just not obvious this time around. But either way, the next part is what’s more important: “Bilateral pulmonary nodules, the majority of which were not present on the prior examination of 5/19/10, suspicious for (parenchymal) metastases.”

That word is on a report with my name on it -- metastases.

These new nodules came up quick…in less than 5 weeks. They have all appeared shortly after chemo, so despite all that poison pumped into my body they managed to develop.

I think I’m screwed.

From the day I first found the lumps there was a little part of me that thought I wasn’t going to live to be that ripe old age I once believed was a given. Yeah sure, everyone talks about how breast cancer is so treatable, that’s it’s practically a chronic disease. But that’s just media hype…it’s what people want to believe. And the idea certainly was that chemo would hopefully take care of any possibility for distant spread. Of course the truth they don’t want you to understand is that chemo only helps in about 30% of cases.

I guess it looks like I’m probably in that other 70%.

Once you have cancer you don’t take too much about life for granted. But still, I thought I’d have more disease-free time, you know? My fondest, most deepest wish was that I’d get to be around long enough so that Megan and Daniel would be grown up and on their own. But in my own mind, based on nothing scientific, I felt like it was a reasonable expectation to have 10 years. Okay, bare minimum was to have at least 5 solid years...by then Daniel would be Megan’s age now and I think she understands what she needs to in order to get thru what comes next…as much as any child can. But this is all happening way sooner than I thought…my Danny is still a baby to me now…not even 4 yet. It’s too soon for things to start going bad. I realized yesterday that I’ve been dealing with this for half his little life, he doesn’t remember a cancer-free mom. I wanted him to have more of a life with me being well. Every time I look at him, at both of them, my heart shatters and I cry. They’ve seen too many tears. Meggie keeps saying she thinks it will be okay. That it wouldn’t be fair if it wasn’t. How do I explain to a barely 9 year old child that life isn’t always fair, in fact, it can be incredibly, cruelly unfair?

If this is a metastasis then it is also fast growing and it sure didn’t seem to be effected by chemo. All that poison and these things popped up anyway. So while there are women who still manage to live for a “decent” amount of time with metastatic breast cancer, if you ask me, these fast growing suckers don’t bode well for me being one of them.

I had the PET scan Friday. The tech was a nice woman, we chatted about this and that beforehand, we had a few things in common. After the scan I swear her demeanor changed, but like she was trying to make sure it didn’t seem that way. Just like the mammogram tech’s manner changed last year, and the subsequent ultrasound tech…and then finally the radiologist doing the biopsy. They all knew but couldn’t say. I think the woman yesterday knew too.

But then again, maybe I’m crazy. I want to be crazy.

I can’t tell you how hard this is. I keep searching for some hope, I keep trying to figure out a way that this is not happening. Maybe this is not happening. I don’t want this to be happening. I find myself begging, please, don’t let this be happening.

I would like to keep hoping but I’m afraid to set myself up for being emotionally annihilated. And in my quiet moments of pure thought, like the center of a storm, the way this looks now is if by some miracle it turns out not to be lung metastasis I will have dodged the biggest bullet of a lifetime.

20 comments:

Lesa said...

Dear Kayleigh,

The things you are going through make me feel so selfish. I hope you have solid family support from the grown-ups in your life.

I am sitting here thinking, wow, what do I say next? I am ignorant about what a lot of these things mean, but I do know that it most be terrifying, and I feel so much empathy for you. There is no way to know what you are feeling, but I know as a Mother, (two of my kids are 15, the other is little like yours) they would be my main thought. And I believe that your kids are yours.

If I were you (and please do not think I am presumptuous) I would focus all on them. As my children are adopted I have kept a journal for each of them, they know everything I know about them since the day they were born. I have written letters to them, at first a lot and recently not so much.

I also keep a blog of their lives, which I keep almost every day.

Would doing something like this help you? I know, that worst case (and I freverntly pray there is no worst case) it would help them....Just a thought.

Kayleigh, as I always say to you, I don't know you but you touch my heart. I am praying and keeping you in my thoughts.

Much love your way,

Lesa
In case you want to see my "kid blog":

www.parnhamfamily.blogspot.com

I do this for my kids and their grandparents who live in Canada.

WhiteStone said...

My heart goes out to you...a young mom...I'm much older and my cancer is ovarian, but when I hear of young moms getting any kind of cancer it just makes me weep. I'm praying that you can get effective treatment for these new circumstances. God bless you. Hugs.

Sheila said...

Excuse my language, but holy shit, hon, you are being put through the wringer. *HUG* My heart goes out to you, to your family, to your husband...and I am sending prayers to whatever gods may be that this is not lung metastasis.

Be strong, and squeeze as much happiness as you can out of life.

Hugs,
Sheila

Qwerty said...

Still thinking of and praying for you....
XXX

Grace said...

I have gone through tumor in my brain. When I first digonised as having some lump in my right side brain, it sounded like dreaminy hallucination. I had brain surgery and after the surgery I had all kind of folloing jealth problems. Neurologic, psychiatric, and what ever you name it.
I am so sorry that you are going through this as a young mother(right?). My last one was just over three when I had surgery and was 4 when I was hopitalized for the psychogenic syndromes with epileptic disorder.
For the person who has diseases life in full of unexpected surprises and is very hard to get used to the everyday lives. Well, we are still haveing you here. and That is important as well.

notSupermum said...

I hope you're crazy too.

I hope the next doctor you see has some better news, something definite you can pin your hopes on. This not quite knowing is causing you so much emotional pain, I don't know how anyone would cope any differently.

When do you get to see someone who can give you an idea of the outlook?

Thinking of you as always, you are on my mind a LOT. Much love x

Betty said...

Hang in there. Even with the "m" word, good things can happen. Stay strong, and my prayers are with you..........Betty

notSupermum said...

Hi K, just wondering if you've had anymore updates. Thinking of you, and holding you close to my heart x

woman&warrior said...

Hey Kayleigh,
I follow your blog and am your pal from the WW website. I keep praying for you, keep you and the babies in my thoughts, and just hope so hard that it is not mets. You are a very strong woman and you have a lot of job left to do. You ain't going anywhere, so lets just keep on keeping on.

I know you are scared out of your mind love. I am too. But, let's do our best and see on to tomorrow and many more days after that. There is too much love to share yet.

Love,
W&W

The Writing Instinct said...

Kayleigh, this CANNOT be happening. And I wish you were crazy too. Reading the last couple of posts which I have missed, I am beginning to feel like I am crazy. You are in my thoughts, as are your darling babes, husband and mum. I await an update and in the meantime send you a huge bear hug.

my love now and always,
Mervat

The Writing Instinct said...

Me again. The last 20 months have given you an inner strength that is immeasureable. You can get through this just as you have before. And you will pull through stonger, yet again, to tackle ANYTHING that comes your way.

Mervat
xxoo

Danni said...

Hey there Kayleigh,
I've been following along and thinking about you since last year, via the VB. I can hardly imagine what you are dealing with, but I am so grateful for your honesty and openness with all of us, bringing us in to hold you up as we can.

Sending all the light, love and strength I can muster,
dannimarie

Peaceful Lotus said...

Kayleigh
I don't know if this will be much comfort to you. Life is short for everyone. We never know when we could leave the earth. I know tis fight is hard. I have been fighting my own fight. The most important thing to remember in the fight is.You are not alone. Join a support group. I found comfort in mine. Just knowing other people are suffering like I am somehow helped me cope with my illness. Maybe it can help you cope also.

Live life, don't mourn what you think you don't have. Make the best of this moment. Enjoy each day, remember no matter what anyone tells you you have to hold yourself together. You set the pace for your family, and your friends. Live your life, have fun, even when it's difficult. This is the joy in life, living it even thought you are suffering.
Sending you love and healing vibes,
Hastyfar

Evegan said...

Kayleigh - another VBer here sending you and your family much love, strength and power.

Evy

Anonymous said...

((((((kayleigh))))) Many continued vibes for you and your family.

Love, Horshack xoxox

IslandReb said...

Dear Kayleigh,
IslandReb from the VB here. Just wanted you to know I'm pulling for you, too. I can't imagine how this must feel for you and your family. Stay strong.
Much love,
Rebecca

Ann said...

kayleigh dear, sending love and light to you for the best possible outcome, wonderful healing and diagnostic skills to your medical team, and holding you and your family in my heart.

xoxoxo
coder

Phoebe said...

Dearest Kayleigh,
I love you and am praying for you. I'm so sorry for what you're going through. Please hang on, Sweetie. So many people love you and are pulling for you.
Love,
Karuna from the vb (formerly Phoebebest123)

Anonymous said...

Dearest Kayleigh,
I love you and am praying for you. I am profoundly sorry for all that you're going through. Hang on, Sweetie. So many people love you and are pulling for you.
Love,
Karuna from the vb, formerly Phoebebest123

Phoebe said...

Dearest Kayleigh,
I love you and am praying for you. I'm so sorry for what you're going through. Please hang on and please enjoy the day. So many people love you and are pulling for you.
Love,
Phoebebest123 from the vb