Friday, May 28, 2010

No Happy Bday for me

I was so sick after the second round of tests. Vomiting black and feeling sick, and weak and having the the chills. Admitted to the hospital for more tests. Isn't this fun and I haven't even gotten started down the road with treating cancer. Got released 24 hrs later and my husband dropped me at home to go and pick up the kids. I feel asleep then woke up 5 hrs later to see that they were still not home. Yep he was having fun not dealing with me. I didn't get my baby when I could have had him. He took those 6 hours away from me where I could have nursed and held my baby that I will not get back. Time is going so fast. I still feel so weak and dizzy especially if I stand up.

Oh forgot to tell you that it is stage 3 cancer, isn't that good news at least it is not stage 4. Yeah right I have good news it's only stage 3 cancer.

My kids have messed up the yard by playing with tools building things and one is running the neighborhood. The others have eaten whatever they can. I can't do this I don't care. It will only get worse from here.

You depressed? Of course I am what do you expect. I am too weak to fight.

Wednesday, May 26, 2010

How? Why? and grumpy

We told the kids and I didn't cry in front of them. They asked how did I get this and why I got this. I don't know. At least they didn't ask if I was going to die or I would have cried.

I am so grumpy and feeling so sick. Yeah, now I go to the dr and now I feel sick . I didn't feel sick before. All the tests and drinking icky medicine and no eating has made me grumpy, well I am more than grumpy what is the word for that.

I can barely handle the kids normal acting up behavior and now it is making me angry. It was hard enough on days I feel fine and now this. The worse part to know is that I will feel worse, much worse. How do you explain to the kids yeah all the dr visits I am doing is to make me better but I am feeling and looking worse everyday?

Off to more dr appts today. And more next week.

Monday, May 24, 2010

Crying over split breastmilk

yep i just split 3 oz of milk! that hurt. i need every oz.

Pumping

I have only pumped 6 times and it sucks. It is hard to fit in while nursing my little guy and him needing me. Who would choose to pump instead of nurse? Not talking about moms who pump because baby who won't latch or working moms but talking about the new thing LCs have been seeing that moms want to pump right from the start and not because of problems. It seems a million times harder and I feel so disconnected to my baby and attached to the pump.

Sunday, May 23, 2010

R U going 2 have anymore?

I would always get that question once people found out I have 4 or 5 or 6 kids. At the time I would say I don't know and then after 6 I would resort to well I probably won't since of my age. I was saying what people wanted to hear. Though it wasn't a definite answer, there was still room for a yes. Since this happened on cue I have gotten the question from someone. And this time I *had* to say NO, no more kids for us. I HATED saying that. It was like yeah you all are right, anymore kids would be too much. I appeared normal now. It is normal to not want more kids. To me having to say no meant no more life for me. I am not able to give life.

Saturday, May 22, 2010

Undercover breastpump mission

We looked like we were on some secret mission (or making a drug deal out of the back of her trunk) when we met the breastpump lady at the Target parking lot. And in the middle of it all a friend (who doesn't know yet) drives up asking what are we doing. My friend who is with me tries to advert her from coming any closer and tries to come up with some answer. She drives on. Our undercover mission isn't blown.

At home I am still on that undercover mission. With a big box and going to my room by myself this is very hard to keep this undercover much longer. I need to pump at least 4 times a day for 20 minutes (that is my goal right now). We are planning on dropping the bomb on Wednesday to the kids. They will think this is weird, why am I pumping so much and with a new pump.

This really sucks!

No rest

I haven't gotten much sleep. At first I couldn't fall asleep since my brain was on overload and couldn't turn off. Now I can fall asleep since I am running towards it as my only escape from this cancer. A land of before this. But now I am only able to sleep for a few hours and then I wake up and can't go back to that escape. I haven't eaten much. I don't feel hungry at all and food doesn't taste good. It just taste bland.

The book they gave to me talks about getting from the "why me?" stage to the "why not me?" stage. Hell no, I am not going to that stage! I am not going to say I should have gotten this! I can't stand thought of being positive about getting this. What is positive about this?

I could barely handle what I had before I had no room for more how can I handle anymore when now I am surely overflowing and drowning? I don't want to. I am like a toddler in a temper tantrum saying over and over that I don't want to do this. But no matter it will not make it stop.

Have faith they say, you only need a mustard seed size faith. Well, right now mine is so small it can only be seen under a microscope.

Friday, May 21, 2010

Gilda's Club

Went to Gilda's Club. I am going crazy. I needed to know things. They are just like La Leche League for people with cancer. They were saying all the same things we say, but of course it applies to something horrible like cancer and not something wonderful like breastfeeding. Met two people who have/had cancer. They look so strong. They could answer my questions. Was a very small hope after 5 days of none.

Thursday, May 20, 2010

5, bargining, begging

5 is all I can think about. 5 yrs I can't be gone in 5. 5 is not long enough. That is the only number that I see when I read.

I keep asking for less and less. I am bargining with Him. I am now just begging, begging, begging. I have to be here for way more than 5.

I will take the torture for 5 yrs. I don't want torture for 5 yrs and then not be here.

The drive home from practice was horrible. A hour is such a long time to think. I am going crazy! I am going crazy.

I thought she lived a long time passed the horrible news, how lucky she was. It seemed like a long time then. But now it is not long enough. I don't want to be her. I don't want to be her.

One son asked me if he would be alive in 2020. I first thought I heard him ask if I would be here in 2020. I paused and realized he asked about himself. What would I have said if he asked if I would be here in 2020? Why did he ask me this?

I have talked so calm and rationally today. I hate talking like that. I have to talk like that so I don't scare people. I have to talk like that so I do not scream. When I talk so rationally I feel like I am talking about some other mom and her problem.

(some) Questions I wanted to ask her

I wanted to ask her but didn't, now I can answer them for myself

How do you want me to act?
Anyway. Be real. I know this answer will change. Sometimes I want you to act one way and sometimes another. Bad part is most times you will not know how I want you to act. Just be you.
I don't know how to act in front of you!

Do you want to talk about it?
Yes! No! and again the sucky thing is you won't know which it is but what is worse is not talking to me and not saying anything.

What do you need?
I was too afraid to ask her, I think I was afraid of the answer. I am afraid of cancer. I ran. Can I say we weren't best friends so it was ok I ran? Do I think it is ok if you run? Yes, it is ok if you run. (even if you are good friends with me) I want to run! I did run. Your life is hard and I know you can not wrap your head around this. I can't wrap my head around it. I couldn't back then either. I will not be mad. I will understand. I think you are crazy for not running. You don't need to be there (physically or mentally) for me all the time. Only has much as you can handle. ( I remember thinking back then how to I give all of myself to her when I can't handle my life already.) Well, you can't, so you only have to give as much as you can or want to give. Don't feel bad if you can't. I had it on the edge before this and could barely give anything above that so I understand. Normal life is hard, this is harder, who would wants harder. And if you can change your mind at anytime. I remember thinking well it's been such awhile since I talked to her, I can't call her now, what will she think. Well, I will be glad you called and not care about any time that has passed.

Things that would just come out of my mouth and sound stupid. "How are you?" I will promise to understand why you say that, it is because that is the social norm. Just like "Is he a good baby?" "Does he sleep through the night?" The opening to start a conversation. But just be prepared for my answer. It won't always be "Ok" or if I ignore it and I don't say anything.

Oh and I found another answer I am going to borrow from here---bitsofmyself.com because it is so funny (maybe only people with cancer thinks it's funny?)
"How's your husband (mom, sister etc)?" "They're fine, they don't have cancer."

Will you cry if I say the wrong thing?
Yes and I will cry if you say the right thing. I will cry A LOT. No matter what you say, even if you say nothing. It is me, I have all these things going through my head all the time that makes me cry and get mad.

I would rather you tell me what you can do or what you want to do. I will feel like I am always asking for something. I already feel that way and it has only been 3 days! Just let me know right up front if you can't do something. I won't be mad, I will be relieved that you told me right away.
It feels very weird to talk so rational about this with you but I have to so I can get things done right. But I would rather be crying and screaming right now.

I need to learn how to fight. If you know how to fight and want to help (even a little) fight this, then Me, hubby, 6 kids, and 2 dogs would be ever so grateful.

HDTV

Walked outside this morning. Everything looks like HDTV. So crystal clear, so precise, no blurs. The sun seemed brighter. Everything is so different.

My mind is playing ping pong, going back and forth, back and forth between despair and fighting.

I took my baby to the dr with me. I will take him everywhere, I don't care what they say.

Yeah, it sucks for you to get bad news, but it sucks for me more to have to tell you. I have to tell, I have to do something. I have to get ready for a fight. (Pinged back to fighting but it will pong back to despair with no notice at all.) I need people to fight.

I will have so many dr. appts. I am the one who hates drs. It has only been bad experiences with them. I hate having to fight them. But I have to, I have to get the best, I have to do this perfectly.

Wednesday, May 19, 2010

all i am asking is one thing

it is quiet here now the roller coaster is going down.

all i am asking is just one thing, one thing. i keep asking for less and less. i just want to live i just want to live i just want to live

i'll do all the crap i just want to live i have to be here i have to be here i have to be here

Just like roller coaster

This is just like a roller coaster. Though I only think of a roller coaster going down. Thank you, thank you, thank you to my friend for going with me, again. It was nothing new, stuff we already knew. Just starting this, all the things that have to be done.

Banana flavored drink to drink for the CT scan. How will I drink it? I bet it does not taste like bananas. I like bananas. No medicine ever tastes good. Why? Why do all things that are supposed to help you taste bad? We looked up the the drug used for the CT and it was a L1, the best you can get and safe to breastfeed. I wonder what they will say we I go. Yeah, I am going to throw that book in their face if they say anything different. I am sick of wrong information!

My hubby was great tonight. He was real. He was great tonight.

I told another friend tonight. That family is wonderful. She said don't think ahead. Which really clicked for me. (Natalie may have said that too but I can't remember since I was in this fog.) I will really try hard to do that. I think that might help if I can do it. But these thoughts keep coming.

I went to do laundry. I felt ok doing it. Normal. For a few minutes.

Yes.

The answer is yes. The doctor is not dumb. She knew. My friend, sister, mom, husband had hope. I wasn't even shocked when they called. I cried when I told my friend since I had to say it out loud. This can't be! This can't be.

I went out to the van in my nightgown with the baby to call my friend. Called my mom, called my sister, called my husband at worked but hung up. I can't tell him at work. But he won't be home when I leave for the dr appt. He can still have hope of a no for a little while longer.

I come in and all of a sudden I get the feeling I get on the roller coaster and it starts up the hill. Your stomach is all a flutter and you think "What was I thinking!?!?" I don't want to do this. I don't want to do this but just like the roller coaster it is too late to get off it is going over that hill crashing down fast. Accept I didn't ask to get on this ride! I don't want to do this!

The kids came home and was here during all of this. I am sure wondering what am I doing out in the van with the baby in my nightgown and mom said we could have all the popsicles.

Off to the dr. Now more waiting. I need more answers. I have so many questions but don't know what to ask or what to do.
My mind is still racing can't stop thinking, but don't want to think but I can't help it.

I did take him to practice yesterday. That long hour ride is horrible it gives me too much time to think. I keep saying stop thinking!

I talked to my friend who was there on the bad day. I had talked to the doctor again, she did not give me any hope. My friend did. Though, which is better false hope that will be dashed, I don't know. I did feel better (that being relative now) after talking with her. It was weird to talk so rational at times about things. Like we were talking about some mom's call. A mom who calls and is crying or emotional or her doctor tells her baby is not gaining enough. And then my friend and me talk so calmly on how to solve the problem, what information to give to the mom. Right now I am not there. I am the emotional, crying mom. It felt weird, even stupid, to be talking so rational and calmly about this.

But I did sleep last night. Sleep is wonderful. I had regular dreams. My last refuge right now. Please let it stay that way, don't let this seep into my dreams.

Tuesday, May 18, 2010

Outside

My first time out since Monday. And it is only Tuesday. Went to get my license since I lost it. I had just been there a few months ago everyone seemed in the grind and unhappy. Today everyone looked happy and friendly. Why did it seem that way? They have something to be happy about? I wonder who is sick. The old people look so great. I want to be old.

The lady behind the desk says "I get to help the Princess!" (my only daughter usually wears a princess crown as her headband) "Aren't girls great! I love mine, you're going to have so much fun with her as she grows up. All the things moms and daughters get to do together."
Instantly my eyes water up. I quickly turn away. Will I? Is what I think.

Will things like that always get to me?

Dr. office called, moved my appt up to tomorrow. Why did they do that?

I am supposed to take my son to practice. I always do on Tuesday and Thursday. I am so tired. I stayed up till 3 am and up at 7 am. It will be weird being around people.

Color my hair

3 days before I lost my drivers license. I have to go and get a new one, which means a picture. So I bought a box of hair color to look good for the picture. I get grays thanks to my dad who always had early gray hair. Since I have really thick hair, which everyone says is great, but I had the awful gray hair with it, I would always say, "I would rather have gray hair than no hair." Yep, I would rather have gray hair than no hair.

Why am I thinking about this???? Because all the bad stuff has been pouring through my head so fast and constantly that I have finally gotten to something lesser like this. And maybe because it is easier to think about this than all the other horrible things that go with this. I don't want to think about what is worse but it keeps bubbling up and I keep trying to push it down.

This ain't goin' to be any pretty blog

This will not be some "pretty" blog about how great cancer has made me and all those cliches people say. I am not there and don't see how I will get there.

Why do this blog--now? Because it is easy to call my friend and laminate about how dirty the house is, that I have a long list of things to do, how the kids acted bad today, or any other normal thing.

I have so much swirling in my head I have to get it out. I can't stop thinking about this every second. I can't call her every second. Now I know why it was good and helpful to call my friend and talk about all those things and I would feel better after I hung up. Because it really is ok, nothing bad about a very dirty unorganized house, or that things never get done because there is always tomorrow to do it, and kids driving me crazy is so normal. Normal is hard enough, you have every right to complain about those normal things.

This is not normal.

I wasn't "pretty" in pregnancy and labor, I complained about the pregnancy and all the way through labor. Except at least with that I got a great baby. So if I complain all the way through that and I get my baby, I can only imagine how much more complaining I will do now since this will be a million more times harder. Like I told my friends and midwife in labor was to just be there so I could look at their face for strength. I knew they couldn't take my labor pain away but I knew they were there.

And there will lots of typos and grammar errors. It is just free flowing out of my head. I have to get it out of me.

I WANT TO NURSE MY BABY!

I can't sleep. How am I supposed to sleep? I don't want to think about this but that is all I am doing. I am trying to fight it. I yell, scream so loud in my head NO!! NO!! NO!!



Was this what Sally was thinking when she got dx with cancer? I didn't know what to say or how to act.

I am so MAD MAD MAD!



It is ok doctor I won't sue you for emotional distress that I am having, just tell me you were wrong about the cancer.



I want to nurse my baby. I WANT TO NURSE MY BABY! I WANT TO NURSE MY BABY!
Only a few will understand that.



It took me 14 days to get him latch on correctly. I have psoriaris on my breasts and it is very painful at times and I have to only nurse him on one side at times. And I WANT TO NURSE MY BABY!


Can this wait? Till he is at least weaned?

In limbo questions

How do I go and do anything? How do I go and talk to anyone? Until I know for sure.
(See, I still have hope.)

I guess I pretend Monday with the doctor didn't happen.

It is a strange limbo to be in.

And how do you tell people? Do you tell people? Which people?

How do I tell my children?

Here's to hoping I won't need the answers to those questions.

Monday, May 17, 2010

Cancer caught me?

On the way to the doctor I had told my friend I felt like my body was broken. It just may be.

Maybe I have an incompetent doctor. I can only hope for that now. She did tell me I had to pump and dump for 24 hours since she used fentanyl and versed for my procedure. Which is SO INCORRECT! (see http://www.kellymom.com/ for correct info on medications and breastfeeding.) Maybe she doesn't know what she is talking about when it comes to knowing if something is cancer or not. I can only hope for that right now. The pathology report comes back Thursday or Friday.

Does a doctor tell you you have cancer if you might not have it? Does she give you an appt. with another doctor that is only days away (when usually it takes wks/mths to get in to see them)? Does she tell you the cancer nurse will be calling you to talk to you?

I can only hope she doesn't know what cancer looks like.

I'm 37 years. I said I am getting old. Now I do not think I am old at all.

I am too busy for this. I have a whole summer planned for my kids. 6 kids--15, 10, 8, 6, 3, 8mths.

I don't want this. I can't and won't be one of those people who say "Why not me?" again.

I can give you plenty of reasons "why not me". My husband was medically discharged from Navy because of a back injury. He wanted to be in for life. We have a child with autism. We have another child with cystic fibrosis and an intellectual/cognitive disability. Another child is learning disabled. Another child is an incredibly talented gymnast who needs every last little bit of energy and time and money we have left after all of that to help him pursue what he loves so much. My 2 little ones need me so much and my baby needs me even more 24/7. (There is more but I will stop there since that is more than enough.) That is enough! I have already taken the high road one too many times and said the correct thing of "why not me?" I will not say it again. It should not be us. It is too much!

My favorite saying was "God won't give you more than you can handle". (And I would go on to say--) "Yep, He won't, but he will just keep me on the edge of that cliff. I won't fall off but I hate living on the edge of the cliff. " Right now I feel like I am hanging off the cliff with one hand holding on. At least before I had two feet planted on the solid ground. Will God pull me up and put me on solid ground? I can only hope I have an incompetent doctor. Who wishes for that? Only me, so I can answer the question "Cancer caught me?" with a no.

My friend who was with me at the very best time (the birth of our 6th child) was with me at the very worst time too. I hate that I dragged her into this storm. I am so grateful for her.