Wednesday, June 30, 2010

I HATE bottle feeding!


I bottle fed in public for the first time. It felt weird, like I needed a blanket to cover myself, ha ha. No, I need a shirt that says "I'd rather be breastfeeding."

I have yet again learned so much (just like I did when I was pumping to save him milk). Pumps are not good. All I kept thinking was "This is the best we have come up with for moms?" . Now I have learned that bottle feeding is very different from nursing. Yes, I know I always said that but now it is played out in front of me at every feeding and I can see how EVERYTHING about bottle feeding is different than nursing. My baby has changed. He is now showing all the signs of a bottle fed baby. It is breaking my heart. I have now slept with him for 2 nights since weaning. He does sleep different in relation to me just like sleep doc James McKenna says they do. He was higher up in the bed and not snuggled in the nursing position close to me under my arm. He has now stopped doing the only taking a 1/2 oz and then pushing the bottle out to take a break and then taking it back in a few minutes later to take more. Sort of reminded me of how nursing is. Now he sucks the whole 4 oz down at once. It makes me sad since it is so different from nursing. I feel disconnected from him. I am doing all the feeds because that is how it was and is supposed to be. I miss nursing him so bad. I pray that when I am done with all this I can get him back to nursing. He will only be 15mths if everything goes as planned. I hate cancer, I hate cancer, I hate cancer. Why can't I just have cancer and still nurse at least but oh no cancer has to destory all of your life in every way. It is so sad to see him change to a different baby, he is different from who he was going to be.

Saturday, June 26, 2010


Thursday was the worst. I was tired like I have not been tired before and throwing up, stomach hurting on top of the other symptoms I already had. The last couple of days have been a blur. This is supposed to be the easy time. It is only supposed to get worse they say. I have recovered by Saturday like they said I would with the first chemo round. The next time it will take more days to recover and then more days to recover until I don't recover until I stop this chemo. This is horrible. How will I do this??? I am a wimp for sure. I can barely make it through pregnancy and labor. How can I cope and do this??? I feel like the worst thing about cancer (next to effecting everyone around me) is that it kills you while you are living. It kills your life. You have no life, cancer consumes it all. And it makes me feel so horrible beyond what I have ever known.

Trooper has adjusted to taking the bottle. He has changed since weaning. He acts like he is disconnected from me and the world. He just lays his head down on me and anyone who holds him. He doesn't play on the floor anymore. He just wants to be held. Which I like to do, but he is not himself, he doesn't smile as much or act like he used to. He is different, his spark is gone. It is true what I wrote before about giving every smile I have to my kids. I don't have a lot of them to give and I give them all to him trying to make him be the baby he used to be. I am still so glad I didn't wean him earlier. I miss nursing him so much. When I lay down I miss nursing him at night. We don't even sleep together anymore. Jedi holds him all night in the recliner.

I hate bottle feeding. I don't understand how people say it is easier! It is so hard and complicated and takes forever! How much to make and how much does he want this time, cleaning bottles, and putting them back together, how to transport them and make sure it is at the right temp and doesn't go bad. It is a PAIN. I would love to give a demo of what I do when I feed him now verses what I used to do---just left my shirt and feed him. I feel disconnected from him when I feed him. This is definitely different than nursing him. Though, I do want to say a BIG thank you to my friend Molly who has done everything she can to make bottle feeding easier. I would have been overwhelmed for sure without her thinking for me during this horrible time.

I am not looking forward to July 6, that is my 2nd round of chemo.

Wednesday, June 23, 2010

Nicknames explained

Jedi--my husband--he LOVES Star Wars
Yugi--my 15 yr old son--loves card/computer games
Mr. Clean--my 10 yr old son--loves to clean
Lil Hercules--my 8 yr old son--super strong and talented gymnast
Pumpkin--my 6 yr old son--so cute and best smile ever
Princess--my will turn 4 yrs old on Saturday girl--so of course she is our princess being our only daughter
Trooper--my 9 mth old boy--now my husband might say Trooper is from Star Wars like stormtrooper but it is really because it took 2 wks for him to learn how to latch on and suck. I would say he is being such a trooper since he would keep trying and trying and not give up---he was such a trooper through it.

If I had a nickname for me I would pick Annie. I love that movie, one of my faves. I even had her dress when I was a kid. Sears had a whole line of clothes from the movie and my mom bought me several outfits.

We have 2 dogs--Jango a walker coohound named for a Star Wars character and Reba a bassett hound named for Reba McEntire the country singer

Nite report

Trooper stayed asleep until Princess had an in the middle of the night crying. She does this if she has to go potty or dream that wakes her. Jedi then fed Trooper 2 oz and Trooper drank it all down correctly, but would not let Jedi even hold the bottle. Remember, he had been mostly chewing on the bottle or letting it drip everywhere. He then went back to sleep until 5am when Jedi got up for work. He then cried on me until he finally gave up after an hour of his new cry. I hate this cry. I am trying not to cry during but it is so hard, So I figure a quiet cry is ok and at least better than the full blown ugly cry for him to see.

Sorry if this offends you, wait, not really, I am sticking up for the babies and toddlers. But I really have no sympathy for those who leave a baby to cry it out and/or wean them without a dire reason ie cancer. So this why I can't go to LLL mtgs anymore. I used to be against cry it out and early weaning but could still understand where the mom/dad was coming from on why they wanted to do it--go back to, need more sleep, don't like a moving baby in bed with them or a baby that is nursing all night. I remember understanding and having those feelings. But now I say suck it up parents. You are the adult you can handle it--hey, if people can deal with cancer you can deal with this small in comparison annoyance. They are babies!

So after doing this to my baby, I can't understand people who do this on purpose. So there is no way for me to be a Leader at the LLL mtg and be all nice and understanding about it. Maybe I can come and just be a mom, they can say anything, though the Leaders would hate me for it.

For now I sit in the rocking chair with him as he cries. I wish I could put him the sling but it hurts my port.

I hate cancer, now I hate it even more. Cancer has been so horrible to me and will continue to do worse to me and will probably be what kills me. But does it have to hurt my kids, husband, family, and friends to? Yep, it does, no wonder there is all these cancer websites and posts saying fu cancer.

Tuesday, June 22, 2010

Trooper, Shocking!, Ball and Chain

Trooper took another oz from Jedi! He then fell alseep. But of course it is only 10pm. But hey it is a good start! So glad I gave him the water bottles before this since he then knew what a bottle was. And still very glad that I nursed like normal all the way up till the chemo started. I know it may get boring to read about every thing Trooper does but it will help me see the positives and see yes he is making progress when he has bad moments with it. It was so hard holding him with this new cry that I hadn't heard before. It made be cry. I have a new saying, sort of like when I am in heavy labor I chant "I can do it, this is easy, I can do this." I say that over and over again. Right now when I held him I kept repeating "I know what you want. I love you. I am protecting you." That helps to think that I am protecting him. Like a mom that yanks her child by the arm out of harms way of a speeding car even if it would hurt the child and make them be in shock and not understand why you did it, you were protecting them.

Another side effect of the chemo: Shocking!! Yes, really being shocked! Like electricity! I didn't really believe it when they told me it. Ok so no ice and no really cold drinks but heck even a slightly cold drink gives you a long shock when you swallow it. Not even a short shock. The water/drink has to be very warm like when you leave your drink in your car on a hot day. I was so thirsty, very warm water doesn't quench your thirst, but I guess it is better than having a lllooonnnggg shock when you swallow. This is supposed to apply to touching cold things ie the freezer and fridge, must use gloves or oven mits. I haven't tested touching anything cold because after the cold drink was enough to make me a believer. This will be it harder for me to swallows pills now since I usually open a pudding or applesauce cup to help take the pills and then put the leftover in the fridge to use for the next pill. But now I or someone else has eat the whole thing or toss it out. The kids don't like eating cold pudding or applesauce.

It hasn't even been long since having the chemo pump on but already it I am calling it my ball and chain. It is such a pain changing clothes and taking everywhere. It is like dragging a ball and chain around. So I will now even take longer to answer the phone and most liking miss your call and will have to call you back.

Off to bed for me. Hope Jedi and Trooper can sleep. I do wonder how many times he will wake up and how much he will eat during the night.

Chemo round 1

All the kids, including Trooper, did great with Natalie (Trooper thanks you especially!) and Allison and Constantine. THANK YOU!

When we came to pick him up we forgot his bottle and pacifier. (We had already lost 1 other bottle in our house somewhere!) We were on our way to Gilda's Club for a parent mtg about the cancer camp the kids are going to in July. So he was fussy there and I couldn't hold him since he just kept wanting to nurse.

At home, Jedi took him out of the car seat, he was crying, and he fed him, he took 1 oz. I tried to hold and rock him but he just cried for 30 min. The cry was different from all his other cries. I never say no to nursing him before this. I tried playing a pacifier game where I put it in my mouth and then he would take out of my mouth and he would put it in his mouth. This didn't last too long and he never sucked on it, just chewed. Jedi took him back. So far right now he is "better" with Jedi. Jedi is not looking forward to tonight--- being up and feeding him and trying to get him to sleep and stay asleep. He really has not ever had to do any of this before.

I have started my first side effects of the chemo. My forearms feel squeezed and tingle. My sight is weird. I feel a little drunk when I move my head and have had tunnel vision a view times. They say it will get worse until Saturday and then get a better until next time and then every time after that it will take longer to recover until you don't recover until the chemo is over.

Good night! Good night? I hope so.


170 oz of breastmilk, that is what I got.

Jedi is being a jerk today.

My sleep has been horrible since I found out. I can fall asleep (and thankfully I still haven't had one cancer dream, I will hate when it invades my last peace) but I wake up in the middle of the night and can't go back to sleep. I am so tired.

The start of worse is here and the weather matches it--gloomy, rain, and thunderstorms.

Monday, June 21, 2010

Hard day

Today was more break downs than usual. I have learned from reading other cancer blogs that it doesn't get all better. It is always a roller coaster of up and down. It is so weird to read so many different ones and can relate to each one of them. What will tomorrow bring? It will be ok to leave my children with my dear friends but it will be hard to pick up Trooper and look at him and have him look back at me because he will want to nurse. He always holds out for me. How long will he go before he gives into the bottle and take more than a few sips?

Jedi will not be putting Trooper to sleep or sleeping with him tonight. It will be my last night nursing and probably sleeping with him to for awhile. I am trying to soak it up, every nursing and look of love and perfect peace he gives me since it will be awhile before he gives them to me again.

Thank you, the comments left do help.

I don't know how I will do this

This is horrible. I am am having a freak out. How can I do this. I am horrible managing things right now and then I have to add chemo, radiation, more chemo then horrible life changing surgery too. I break out crying and going back to pretend this is someone else I am thinking about. Reading other people dealing with this is helpful and horrible at the same time. Torrow is going to be so horrible, it is hitting me now that is so soon. It will just be worse than it is now and I can't take much more it seems. As any mom knows it is hard to parent at times even when you are at your best mentally and physically and now I will not have that. Jedi has to work (chemo doesn't even stop him--yes we need him to work to pay the bills) but I just need him to really be here and care and understand, I don't even think he still gets what is happening, he still thinks this is no big deal, just some medicine like tylenol. I don't want to hear you will get through this. Yes, ok, I will get through this but it will drive me over the cliff hanging by one finger. Tell me how you manage your children and life while hanging on by a finger. I am crying in front of Princess and Trooper. He's too young to understand and Princess doesn't say anything because she is used to seeing me cry now.

Maybe I won't be sick after chemo but I know my mind will be and I don't know how I will function with Trooper.

Sunday, June 20, 2010

Breastfeeding and Weaning how it is supposed to be

I sat the kids down and told them about how I have to stop nursing Trooper. I wanted them to know that this is NOT how it is supposed to be. This is not normal or good. I don't want Princess (my almost 4 yr girl ) to think this is what she should do. What impression have I left her with?? Let a baby cry and wean them when they are so young and that all this "stuff" I have around is normal. Their last memories will not be of me nursing a toddler, but of this horrible situation.

I treasure every nursing I have with him. I will miss most the way he can look up at me and smile at me while still at the breast. He is attached to me, a person, now he will be attached to a bottle, a thing. I hope he will let me hold him and feed him with the bottle.

A storm is coming

I feel just like a picture my friend took of the storm we had the other day. It was a picture of dark, horrible, huge, frightening rolling clouds coming in over her neighborhood. That is what I see is coming for me and my family. The dx was just the small rain shower and Tuesday will be the beginning of the real storm. That is the day I start chemo and will wean Trooper. I wonder how the chemo will effect me. I know how weaning will effect Trooper and me and Jedi (dear husband), who I hope will help me with the weaning.

I feel like I can not protect my family from this storm, there is no where to hide, no basement to run to. I have to stand and face it full force.

Friday, June 18, 2010

Totally Opposite

On my kitchen counter is many bottles, several pacifiers, hosptial grade pump, pump parts, and a freezer of breastmilk. How do I *decrease* my supply to *nothing* very fast? I have even thought, can I get a baby *to take* a nipple shield that I close off the holes in.

All opposite of what is normal for me. I never have any bottles, pacifiers, pump stuff, or more than a few oz of milk in the fridge and I am always asked by moms how to wean from a nipple shield and how to increase their milk supply. It is like being in the Twilight Zone.

Closing Happily Held

I will be closing Happily Held and not doing babywearing classes or selling carriers anymore. Even right now I can't wear my sling or mei tai since it lays across my port sight and hurts.

So how do I let Maya Wrap know? Call them? Email them? What if they ask me why? I still have a very hard time telling people I have cancer.

I hope Trooper will be happily held since I can't nurse him.

Wednesday, June 16, 2010

Scarlet Letter C

I am now officially branded for cancer-- I had my port surgery. Sort of reminds me of the Scarlet Letter "A". It will give me all the chemo meds. I start Tuesday afternoon. It will be my last day of nursing. I went to count my milk that has filled a huge portion of my freezer and it looks like so much but it is no where close to what I need for Trooper to even get to 1 yr old. So I pumped more and then split an oz of milk! Then I pumped as he cried for me. This is breaking me down. I still can't imagine not nursing him. My chest and arm is sore I can't even have him nurse on the port side since it hurts.

Sunday, June 13, 2010

fight bad with more bad

So cancer is horrible and very bad and so to fight it the only thing we have is more horrible and very bad (chemo and radiation). Why can't we fight bad with something good?

I have to wean so very soon because of bad things. Why can't anything be good?

Saturday, June 12, 2010

The perfect note and hope

I told you about the fight with my mom about all this judgement of everything about me and my life and how I am dealing with this. She left today early in the morning even before I was awake (that had been the plan all along). She left a note for me. I didn't want to read it because she had made me so upset that I didn't need that again. I finally got the mind to read it and it was the perfect thing to say to me. I couldn't believe it came from her, it was so amazing, it was exactly want I needed. God must have gave her the words to write, a small miracle happened. She gave me a Bible quote that was perfect. And just reflected my feelings back to me---saying yes this is hard, your life is hard, and acknowledging all that I have gone through in my life and what is going to happen. That is what I need. Someone to listen and say yep this sucks and no judgement about how I deal with this and anything else, just acceptance and love. This letter was a miracle and I think God helped her write it considering my mom is an agnostic.

After reading that note I called my sister she told me that when she was at work some woman (who she doesn't know) came up to her and touch her arm and said she could see her sadness and that she would pray for her and her sister and all would be ok. How strange is that. My sister was freaked out. It gives me hope.

Friday, June 11, 2010

Little bit of everything

Had fight with my mom, she just doesn't understand at all!!!

But Natalie does and she is GREAT and AMAZING!!!

Please just let me deal with this how I can deal with this. I know it is most likely not how you would deal with this but this how I deal with it.

Wednesday, June 9, 2010

now i know what pushes me over edge and makes me know i cant handle this:
it is when the kids are going crazy and being bad and i think see i cant handle the normal craziness how can i handle anymore without flipping out and going off the side of the cliff

typing one handed because i am pumping

Sunday, June 6, 2010

"Just don't give up I'm workin it out
Please don't give in, I will let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Yeah, it's plain to see (plain to see)
that baby you're beautiful
And there's nothing wrong with you
(nothing wrong with you)
It's me, I'm a freak (yeah)
but thanks for lovin' me
Cause you're doing it perfectly
(it perfectly)

There might have been a time
When I would let you slip away
I wouldn't even try
But I think you could save my life"

Thursday, June 3, 2010

Went to Gilda's Club. It was not for me. I am not like those people. The kids had fun, heck I think hubby had fun. He is so up and positive it makes me mad.

Went to my son's practice today. That was good and helpful. Talked with another team mom who had cancer. She understood me. I told her I was in the anger stage and I didn't see me getting past that. She said she stayed in the anger stage the whole time. It made me feel normal. The other team moms are being so great about taking my son in so he continue to do gymnastics. It would break me if he couldn't do it.

Tuesday, June 1, 2010

Play, rewind, play, rewind

That is why I haven't posted. It is mostly the same yucky stuff going through my head. I can't sleep. I think, think, think, then say stop, stop, stop, then say sleep, sleep, sleep, but no sleep, it just comes back to think, think, think. During the day it is ever present. I feel like I am being followed by someone who is holding a gun to my head. It is always there. I can try to ignore it but then it always hits me like an ocean wave that knocks you down. I try to stay present and not think of the future but that is so hard to do. Even the present sucks. To much everyday life and then all of this to deal with. My mind is going to explode.

Port is coming soon and then that means chemo (on a pump) and radiation (5 days a wk!) and then that means no more nursing Super Trooper. I can't wrap my head around that and actually not nurse him. I will freak out. He will freak out. I don't have much milk saved up. We are trying to get him up to 3 jars of baby food a day and add yogurt. I hope he will understand that I love him even though I am being so mean. Pray he will understand.