Tuesday, December 28, 2010

Before and After

I forgot to mention I got a haircut. I finally got up the bravery to go and get my haircut again after that horrible haircut that I got to prepare for my hair falling out. I was nervous when I got there, but figured it couldn't look worse than it already was. My hair was so uneven from breaking and falling out and thinner in certain spots. She did a great job and mad it look so good. I was so happy. I do love my hair now. I had worn my chemo hair in a very small thin stub of a pony tail since June never taking it down or rarely washing or brushing it since more would just fall out. Now it has finally stopped shedding.

I wrote a post about how the "you look so good" comments bother me. I think I really know why it bothers me. A mother died yesterday. I had met her twice and I remember her story and her face and exactly how she looked (Natalie knows how big that is! LOL--inside joke!). She looked SO GOOD. So good. So normal. Nothing wrong with her. Yet she had cancer. Looks don't tell you everything, looks don't tell you anything. You can have cancer and look so good on the outside but on the inside it looks so bad. I went to the "Look Good, Feel Better" program for cancer patients and yes I feel better about my hair looking better now but looking good doesn't make my cancer any better. That mother who died yesterday was dx only 8 months ago and she looked so good. I have met many people now who look good and sound good (another thing people like to say to you). It doesn't mean anything is better because you look and sound good.

I know for some it may be a good thing for them to stay away from hearing about others who die of cancer but for me it is a helpful reminder. I remember I ran away from it before I was dx. Now there is no running away from it. The Gilda's Club Leader (she does not have cancer just moderates the group) says you should take a cancer free day and not think about the cancer, pretend you don't have it. Like yeah right! How do you do that! No way! The nerve pain reminds me all the time, not nursing Trooper reminds me all the time, anything can make me think about cancer! I did have a few hours in August when we went to Wisconsin Dells that I didn't think about the cancer and then when I did it came crashing down on me. I think (for me) it is not good to pretend I don't have cancer. I think learning to live and manage it will be more helpful for me.


I taped Little Hercules at the gym today, his coach said for him to watch it so he could see himself. When we played it we saw the older things that were recorded. There was me and Trooper dated 2 days before my dx and then there was us recorded 2 days after my dx. I had no idea our life would change so drastically and so fast. How I wish for the days before my dx. No matter the worst days, it was better than now. I also saw the videos we taped of me nursing Trooper. It was to remember and to show him so he would latch on again. I just cried and cried. My life will be before and after my cancer dx. Trooper wasn't interested in watching the TV. That made me cry. I had come to the ok feeling that he may not nurse again---I keep telling myself it would be ok if he doesn't. I say that to make myself feel better. But seeing those videos of him nursing just breaks my heart and crushes me. It was so amazing to see him nurse so easily and latch on and off without even thinking. And now nothing from him. How easy it was to nurse and how comforting for him and me. How attached we were. I miss it so much! Why won't he nurse? Is he mad at me for weaning him? Was he just too young and doesn't remember?

So busy, so tired, but now have hope

I wish I could just post my thoughts without having to type them--1) it hurts to type 2) I am having a hard time finding time to type 3) I still need to get these thoughts out of my head because they keep replaying in my mind until I do.

A family anonymously gave Christmas to our family. It was a huge surprise! I was so sad that we were not going to be able to keep our family tradition of going to Wisconsin Dells for Christmas (we had done this instead of presents). This family gave us a stay at a very close waterpark which was perfect since it was super close so my oldest son could drive (it hurts to drive with my feet and the 5 hr trip would have been too much for me and not ok for my newbie driver son to do on back roads and snow to Wisconsin), and the waterpark is small so I could sit and watch all the kids at once (the water and walking without shoes hurts too much). It was really perfect. Then I got really sick the second day and we had to come home early. But still the kids seemed ok with it all.

I am now in no more pain from the radiation despite my skin still looking bad. I still feel like the chemo and radiation effects are still there though and get tired easily and just feel run downed. I have a wheelchair now and that has been a huge help for when I go out. We went to the mall. It was great to be able to go to all the places I wanted to go. My pain from the nerve damage finally has stopped getting worse and is leveled off. This makes me happy like maybe it will get better with time. I haven't had a lot of the intense pain, it is amazing how your mood can change when you are not in so much pain.

To tell the truth I haven't had any hope since being dx with cancer. I immediately felt gone. But after learning about my Granny's (my dad's mom) life it gives me hope for the first time that maybe I can live and maybe I can be strong like she was. And it gives me hope for how my kids will think of me. I still have those moments of despair but at least now I do have moments of hope.

Saturday, December 18, 2010

Got Milk?

About every couple of hours of EVERY day since I had to wean I think about breastfeeding me baby. The thought doesn't go away and it hasn't gotten easier to deal with not nursing him. If anything, it makes me miss it more. Every day and moment that I wish I could nurse him makes me realize, even more than when I was nursing any of my children, that nursing is GREAT and makes like so much easier. Nursing (for me) is totally different from what I am doing now. This cancer has driven a space between me and my baby. With me leaving him for the many dr appts to not being able to care for him when I am so sick, and not having the nursing "glue" to hold us together has made this happen. Oh, how I wish I could have nursed him through this cancer treatment!

I am now free of the meds and could nurse him. Yet, he will not latch on. I have even tried a SNS (supplemental nursing system) since I have no milk. I will keep offering it to him but I am switching gears. I am now pumping with a hospital grade pump so I can get back my milk supply and then be able to give him my milk in a bottle (if he doesn't latch on). I have pumped for a total of 5 times and I have drops coming out! It is really amazing to think that after not nursing for 6 mths and going through chemo and radiation (and most likely those things also have put me into premature menopause) my body still will start to produce milk! I have just bought some More Milk Special Blend to help increase production. I don't have any milk to collect, maybe in a week or two I will have something to start saving. But just seeing these drops give me hope.

If I do the surgery (it would be around Feb 21), presumably I would have a supply by then, it makes things challenging. I would be in the hospital for at least 2 wks. And I would not be well during most of that time. How will I do it? I have not mentioned to any dr that I have started to try and build a supply. They would not understand at all. Perhaps even some of my friends or other people in the breastfeeding community might not either. But I have to do it no matter if he never latches on again or even if I do not get any milk to give to him. At least I know I went for it, I will not have a sense of I wish I had tried it. He is 15 mths and my new goal will be to reach 2 yrs of giving him breastmilk. (Just like the WHO recommends.)My last goal was reached, it was to have milk for him till he turned 1 yr old.

I still have milk from my milk mamas! He still loves it and drinks every drop of it! I am so grateful that I have been given this incredible gift! Please know milk mamas I thank you and say a blessing to you all every time I hold my baby and give him your precious milk. It makes me feel like we give a hard punch to the cancer every time I feed him your milk. Ha, ha cancer you can't take everything away from me or my baby!

On a breastfeeding email list I am on it was discussed about informal milk sharing and how the FDA was looking into milk banks and milk sharing. I am for sure glad that I am able to informal milk share. I would not have been able to get milk from a milk bank. What if there had been a list of requirements and hoops I had to go through to milk share with my friends? I am informed of the risks and took precautions I thought was necessary for us. If anything, my experience has made me wish that this was an option for more moms and it was more widely known and accepted. I will sing the praises of this option and let other moms know about it. I would think, at the very least, breastmilk should be THE supplement in the hospital for newborns. It should be very easy to order some breastmilk for a baby needing a supplement if for some reason the mom can't provide it. I am extremely grateful that my milk mama donors have not required me to pay them for there milk. (I couldn't afford it now with everything going on.) I am in favor of moms being able to profit from THEIR MILK. It is upsetting to me about companies profitting from moms who donate their milk to them. Currently a nonprofit milk bank is the way to go for moms who want to donate their milk to help babies.

This got long! As my friends know I could talk about breastfeeding (and birth) issues forever!

Thursday, December 9, 2010

This is a pain in the *ss!

It really is. I HATE this!!!!! Pain is horrible, give me childbirth! It hurts to hold Trooper and that is all he wants most of the time. I have to leave him out of the bathroom or he will see me and he will never potty train after he sees me in there in such pain. So he is outside the door crying and screaming with the Princess saying he needs you, he wants in mommy. I am a mess with this. Everyday since I quit radiation early I don't regret it at all and so glad that I stood up for that. Everything I do is a chore and a pain. My feet hurt all the time ranging from doing good at a 3 to many times a day at an 8. It is so hard to describe since it doesn't even make sense--- my feet and legs up to my knees are numb and sting and cramp and feel like I am walking on rocks all at the same time and if someone touches my feet it sends shocks up me. Yes, how can my feet feel this way and be numb too! My fingers sting and is hard to write with a pen and with every hit of the keyboard I feel it, it is not a normal feelings a short sting. The newest thing is feeling like something is on my leg, like cob webs and I go and try to rub or look at my leg and nothing is there. My feet will feel like they have swollen up and that my feet are to tight for my shoes ( I only wear crocs because of this!) but when I look at my feet they are normal sized. It is really crazy what your damaged nerves can do!

All I think is how will I cope if I have surgery if I can't even cope now.

I have an appt on Monday in Iowa City with the GI dr. to talk about his part of the surgery. Not looking foward to it.

Tuesday, December 7, 2010

No more Radiation!

I have decided I am done with radiation. I feel good with that decision. I was supposed to do 28 days and I did 24 days. So I think that is good. The pain is awful and can only imagine what it would feel like if I did 4 more days of being fried. It will now take 2-3 wks to heal. I do hope the pain goes away soon and that it does not last. Radiation can cause adhesions and that is what causes pain.

I am getting nervous now for the next part of this horrible cancer dx. I am supposed to do surgery. I haven't decided if I will do it or not yet. I will meet with all the different drs again and then decide. It is not simple surgery or this would be easy to say yes to. It is a huge change in my body and pain and a long recovery to go through and not even sure how helpful it will be for my cancer to stay away not reoccur when the odds are so in favor of reoccurring even if you do surgery.

"Resilience is accepting your new reality, even if it's less good than the one you had before. You can fight it, you can do nothing but scream about what you've lost, or you can accept that and try to put together something that's good."
Elizabeth Edwards, RIP

I hope I can get to that point. Still very far off for me but I think I have moved that way an inch or two since the beginning of this.

Saturday, December 4, 2010

Cancer is so so cruel

Cancer is so cruel. Cancer comes and hits someone once but why do you have to come and hit someone again. Cancer is so cruel.

I am so upset over hearing more news of cancer coming back to people who fought it and won, for a time, it shouldn't be that way, you fight it once and it should be done, you did your time, it messed up your life and everyone around you and used your strength and yet it comes back for more fighting. And even when it doesn't come back cancer leaves its fear of coming back with every dr appt and scan and blood test you have. I HATE CANCER!!!!! It takes and takes and takes. I can not fight cancer. PLEASE PLEASE PLEASE PLEASE God come and fight this cruel cancer!!!!!

Monday, November 22, 2010

Off ball and chain for now

I have gotten worse, even from this morning when I was at the chemo dr. They took me off the ball and chain (aka 24/7 chemo pump) until Monday when they will test me again to see how I am doing and if I am feeling better. My feet have gotten so much worse. I can barely walk as of tonight. It is like I am walking on rocks. My feet are numb and sting and hurt all at the same time. My stomach has also been hurting nonstop. Hopefully with stopping the chemo I will start to feel some relief soon.

Wednesday, November 17, 2010

You look good, you sound good

I remember saying that to others. I wonder how they felt when I said that. I know I for some reason don't like it so much. I look good? I have never had so many comments about how good I look until I got cancer. I don't think anyone told me I looked good before I got dx. Maybe I didn't look goo then. So I am supposed to be happy that I look good and feel happy when people say it to me but I do not feel that way at all. I even went to the cancer "Look Good, Feel Better" program they have. It is all about looking good with makeup, wigs and then you will feel better. You get free makeup. It sounded like a good idea and for that time I felt normal girls night out doing something normal and meeting other woman who understood. But in general it doesn't matter if I look good, it doesn't make me feel good. And so I guess that is the sting when I hear (again and again) you look so good. I know the other meaning of this phrase is also really "How can you look so normal and have cancer?" I know that is what I think all the time. I am so normal looking and yet I have this cancer.

Another thing that has annoyed me is "at least you haven't lost your hair". Yes, I have lost my hair. Yep, not completely bald so maybe I shouldn't complain, but you know that won't stop me! :-)

I am fried

I have started radiation, hopefully I won't get too fried. I am doing all the precautionary stuff I have learned from the colonclub message boards in hopes it won't get too bad. It took me about 7 times not to cry during the treatment. It sucks doing radiation more than the chemo for me. Sitting in the chemo chair seemed normal to sit. But to lay how you have to lay to get pelvic radiation is uncomfortable and embarrassing. It is every day, like a job you do not want to go, except you get paid in awful side effects. If I stay on track I will be done on Dec 10. Except the frying doesn't stop, you still keep getting fried for weeks afterward.

My blood counts this week was low so they reduced my chemo dose and I will go back Thursday to get it rechecked.

During the radiation I still get chemo in the form of a pump "fanny pack" that I wear 24/7 never taking it off just refill it and get a new needle and tubing every Monday. The "purse" it came with was awful and ugly. It had a plastic strap that was thin and would dig into my shoulder. So I found my own purse to put my chemo pump in and it is much better in terms of looks and comfort.

I will not tell all

As I have already said this blog will not be helpful. And even though it may seem as if I am telling everything I am going through and every feeling I feel, it is not. It is too much and too much of things some people don't want to know how it really is. I know before this I had NO CLUE what it meant to have cancer AND have cancer treatment. Sort of like before you had kids you thought you knew what it meant to have a baby but it wasn't until YOU had a baby that you really could grasp it. So unlike having a baby I wish no one have the reality of knowing about this for themself so hopefully you won't ever have to grasp and understand it.

I even feel as if I shouldn't tell my best friend all of this, it is just too bad what I feel emotiontally and physically. I don't want to bring her more down. Life is hard enough.

www.ColonClub.com is the reality of this cancer and helpful place to go or if you happen upon my blog and have cancer go there for help and answers. That website has been my place that I feel understood and not alone. Sadly, I am not alone in this. It is shocking the young people there. The moms with children. It breaks my heart to know so many others are going through this awfulness.

Friday, October 22, 2010

Star Trek

I am on a movie theme kick for my blog title posts!

Having finished the horrible FolFox chemo and now to start even more chemo soon. And I am feeling better since I am on a "break" from treatment. Hopefully the cancer is on a break too and not multiplying during this time! I have thought about how horrible the chemo is. Even my friend who is a dr calls the chemo poison. It really is poison to your body. Anyway, it made me think of the movie Star Trek the Journey Home one where they go back to Earth and save these whales to save the world (or something like that). Well, in one scene they are in a hospital and Star Trek Dr. McCoy sees a patient getting treatment for some illness and just thinks it is crazy what the drs are going to do to the patient and says something like "Is this the dark ages. What are they thinking that would be helpful??" and basically thinks the way they practice medicine is crazy and barbaric. To which I think one day people will look back and say "People were so desperate to get rid of cancer that they took poison." Just think about how we used to treat many things in the past and we would say that is crazy, how did people think that was a good idea. I feel in my heart, mind, and body chemo is poison and it is crazy for me to do it (and even more so for radiation that I will be having!) but I am desperate and no choice as the drs say "Take this or die." whenever I object to the poisons they want to give me. It sucks knowing you are doing something stupid and it will hurt you and may even kill you. It is weird to say radiation and poison is bad for healthy people but great for sick people. Doesn't that sound SO MESSED UP!

Monday, October 18, 2010


So I tried not posting as you see for quite a while. Thought maybe that would help change things. But it didn't. The thoughts still come and I even feel worse since they stay in me instead of with writing I feel like they get out of me.

Someone asked me something along the lines of is this all I talk about, when have I talked about something else. Well, that made me upset. It instantly made me think of the movie Titanic. Remember the scene when the ship hits the iceberg and they start to get the life jackets out and try to get people on life boats and many people are talking and walking around thinking nothing bad is happening and they plan to go back to their room (be sure to have the bed turned down, and heat on and my tea and biscuits ready they even tell a maid). They don't put on the life jackets they go about things like the ship is NOT sinking. They are even playing music and drinking and going about things normally. I feel like that is the people around me and I am Rose running around and I realize the dire situation that the ship is sinking. Of course that is what I am thinking about and talking about, I am in a horrible situation and know it and feel it and it is consuming me as it should at this time. I have to fight this, I don't want to sink, I want to live and I have to think about and deal with it and not pretend it is not happening and that life will go on as normal. It will never be what it was and that sucks. So it is hard to be with people when I know the ship is sinking and I am trying to fight for my life and go about being "normal" or around people who want me to pretend the ship is not sinking and nothing has changed, just go back to normal and stop thinking and talking so much about my sinking ship.

So remember the warning on the top of my blog, this won't be pretty and turn back now if you can't handle my sinking ship since I will be like Rose running around trying to survive.

Tuesday, September 14, 2010

Another song I needed

This is my prayer now I have to do this

What Faith Can Do by Kutless

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you're stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

you can see it here http://www.youtube.com/watch?v=hGStix70S1k&feature=related

This was also given to me by the same lady----thanks to her---I needed this.

Who knew Hannah Montana was so wise

Another lady with cancer told me to listen to this song:

The Climb

I can almost see it
That dream I'm dreamin
But there's a voice inside my head that says I'll never make it
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shakin
But I gotta keep tryin
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanta make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it but these are the moments that
I'm gonna remember most yeah
I just gotta keep going
And I gotta be strong
Just keep pushing on 'cause

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
But sometimes I gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith

It's all about the climb
Keep your faith
Keep your faith

You can see it here-- http://www.youtube.com/watch?v=rkwU92ak07Q&feature=related

I just have to keep playing this over and over in my head.
I want to do this. I listen to this song in the van on the way home from gymnastics with Lil Hercules, hopefully he didn't see me cryin. It was dark.

Saturday, September 11, 2010

Trooper Bday, Chemo diet, and I know why this blog is such a downer

I know why this blog is such a downer. I only write when I am down. When I am "ok" I don't post, I am doing things, living life.

But here is some good news. And I mean it. I went to get out jeans since now I get cold easy and then I start to hurt. It was so great fitting into all these jeans that I hadn't worn in forever ( I save all these don't fit clothes before this--you know one day you will fit them) well now I fit them. I love it, it was so fun and made me happy to fit so nicely into them. I love getting dressed now. So for me that is the good thing about chemo, a great and super easy diet. I hated diets before this, it was hard to loose weight. Now it comes off easy.

Today we are celebrating Troopers birthday even though it was Wednesday. He is 1 yr old! And the good thing we made it to 1 yr of nothing but breastmilk! I am so thankful for ALL the milk mamas who helped make that possible, no matter how much or little you gave, we use every drop and grateful no matter the amount you gave. I haven't been out to the deep freeze to see how much is left, scared to but hopefully since it is full we can make it another few months of breastmilk for him. We of course got him a Star Wars birthday cake. On the cake we told the lady to put happy birthday Trooper. We didn't say that wasn't his real name. She gave a look like you named you kid Trooper. :-)

Friday, September 10, 2010

I know I am not helpful and the odds

I know this blog is not helpful to the person who finds this and has cancer, sorry I just can't be that way right now, maybe never it feels like. I have come across several blogs that are helpful and I thank them for that, they are way better at this than me. I think it is because I just can't handle anymore at times, I can't be helpful since I am so far in need of help. So remember that is why I put the warning on my the top of my blog to turn back now since this won't help anyone.

I haven't talk to my dad before this for years and recently I had started talking to him on skype (you must try this, very neat and free!). Anyway I haven't talked to him in over a week now and nothing happened between us like it usually would have, it is just that I can't see him with me like this. I think it would be hard for him to see me like this than me not talking with anymore.

This cancer is like a puzzle. When I was first dx I got one piece of the puzzle and every day since then I am getting more and more pieces of the puzzle and I hate the way the picture is looking.

The odds--I should play the lottery--that I person my age would get this type of cancer-- .05 %
Is that shocking or what? Don't forget the point-- way less than 1% chance!

5 Year Survival Rates for my specific cancer type and Stage 3B (T4,N1)---35%-42%

Chance of recurrence 50%

Chance that it will recur within the first year after surgery 5-30%

Tuesday, August 31, 2010

no cute title for this post

When we went on our family vacation this weekend I had the longest times of not thinking about cancer-- a couple of hours where it didn't cross my mind. But of course it always comes back across my mind and it even hurts more when you haven't thought about it for a longer time since you are lulled into this fake world that nothing is wrong and you don't have cancer. I have talked to 2 people that had horrible things happen, they sound and act so normal. Yep, you just have to be normal, there is no other way to be or you would just crawl into a hole. Yet I hate being normal, there is no reason to be normal. It feels so fake.

I cried tonight. I hate it. Seeing how things will not be the same.

Monday, August 23, 2010

We already talked about that

How well do you think it would go over with a new mom if I told her "I already talked to you about how to increase supply (or wean a baby, how to latch etc). " "We already talked about this, we don't need to talk about it again." Yeah, how long would it take for people not to want to call me for help? How would that mom feel? For the record I would never tell a mom that. I know when a mom talks with me it is often important to go over things again especially when she calls me back since when she first called she was in a different mindset than when she calls back the second or third time.

Well, that is what my chemo dr said to me when I asked questions. "I already told you, we already talked about this." I even had to point out I was in a different mindset when we talked before and I need to go over the info again so I can absorb it and make decisions. That didn't matter to him. In general, I haven't been happy with any of the cancer drs I have met. They must be numb to this. This is no big deal to them, I am just a number, they just want me to shut up and do whatever they say and don't question and don't ask the hard questions or repeat questions. They don't even tell you the side effects and when they do they down play it. I guess they don't have to tell you about the very bad (death causing) side effects because it doesn't matter, you have cancer and that causes death so so what if the drug can cause the same thing.

I am paying you dr so answer my questions, tell me things! Yet they don't get that or don't care since there will always be another cancer patient to take my place.

Tuesday, August 17, 2010

I am just doing this

I am not strong. I am only doing this. Just putting up with this crap. Talked to a friend who is strong and going through something even worse than this. Unless she is like me, I just look strong to others, I just look like I am coping so great with this. Someone told me I was coping so great. I am not, but do I tell them that. I just avoiding replying to that comment because I hate hate lying.

Jedi went to pick up my meds and pudding. He took forever! The ac is leaking so has to be turned off, the kids spilled water on the carpet, the kids won't go to sleep and school tomorrow. I feel like you know what. And Jedi leaves without any kids for a hour and half. For me to deal with it all. Well I guess he needs his time since lucky me got to go by myself and do chemo for 6 hrs. Not said in a good tone in my mind.

He's now home folding laundry. That is helpful said with a loving tone in my mind.

Off to sleep without Trooper tonight, too sick. My hands hurt from typing.

Cancer invades even more, it is a forever thing

Cancer had already invaded my tissue, then it invaded my every waking thought. Now it has invaded my last sanctuary, sleep. I had a nightmare about it. Cancer never stops. This is a forever thing, even if they get it out right now, it will never be gone, it can come back (high recurrence rate for my type of cancer). It messes with *everything* in your life *forever*. This will never go away.

Friday, August 13, 2010

This ain't no pink cancer

Ok, so here I go.

Please, I hope no one takes no offense to this post, I'm not meaning to down anyone but these are just my feelings.

Someone had made the comment to me about getting a pink ribbon and this shirt that said "Fight like a girl". Well, nope not for me, that is breast cancer. I don't have that. I don't have the cancer that everyone seems to care about or market so well that is everywhere you go on every little item in the store. There are no 5k runs or fancy fundraisers or anything like that. There is no out cry.
I have rectal cancer. I hate even saying it. Not even colon cancer, that would be a little easier to say and heck I wish I had colon cancer then I would have had a better prognosis. Sharon Osbourne (wife to Ozzy) has colon cancer and she said after her treatment that she thought she would start a foundation to help others who are dealing with colorectal cancer. She thought it was going to be easy. She thought people would throw money at it and it would be easy to have fundraisers. Turns out she says people don't, it wasn't easy. And anyway what color ribbon would you have she said? Then Joan Rivers chimes in, not a color anyone would want. Can you guess the color she was talking about? Breast cancer has a slogan "Save the ta ta's", there is no "Save the colon". Who cares to save it? It is not sexy or important. Even in the medical community, they are not fixing it nearly as well as breasts. You can get breast implants if you choose. Heck even people who don't have breast cancer want breast implants! Because they are so real feeling and look better than the natural ones. With colorectal cancer they just cut it out, they don't give you a new fake, feels and works just like real intestines. And no one is lining up, even the people with colorectal cancer run the other way. All we have is a bag. A bag. After all these years, they still only have a bag. I guess no money and fundraising going into how to make a great fake colon or rectum. And who cares about it? Not the medical community or you would think there would be something better by now. It didn't take long to come up with fake breasts so good that make people line up to get them.

Tuesday, August 10, 2010

Chemo Round 4

Blah, blah, yada, yada, yada. Nothing new just the same yuck. Maybe I was a tiny bit better or maybe just getting used to feeling like crap. I know I am more tired, that is for sure. I don't want to hear how I am half way through because I am not half way through treatment! I still have radiation/24/7 chemo pump to come and surgery (in my mind that I am not going to do).

On the good, I LOVE sleeping with my little Trooper. I know I have posted it before but it is the bright spot in this and moments of pure happiness. I can't imagine weaning him and not sleeping with him too. It would be even more of a disconnect. I can even sleep with him when I am really feeling sick.

Mr. Clean (my 10yr old) has been super good and helpful this week. I think Lil Hercules (my 8yr old) is getting homesick spending all those days in Iowa City. Thankfully, this will be his last time to spend time away from us, we pick him up Wednesday. I am so grateful for all the families that took him and tried to take his mind off all of this and loved him.

Tuesday, August 3, 2010

Hair today, gone tomorrow

Here is my tip on how to try and keep your hair during chemo and lessen the horrible effect of watching it fall out. Cut it just short enough that it will still go into a little stubby ponytail. Then only wash and comb your hair every 3 days or longer if you can get away with it. Since this is when it is the most traumatic process of washing and combing your hair and seeing it just keep falling out, it doesn't stop no matter how much you comb and still comes out even if you run your fingers through it. Even if you wear your hair down you will shed as you move your head ,so put your hair in the little pony tail and then hairspray it in place and wear it like that all the time. Hairspray really helps keep it on your head. Hopefully I can continue to do this for awhile. It is a good thing I had really thick hair to start with so it may take some time to have it go away.

Sunday, August 1, 2010

What was I thinking??

What was I thinking??? I know. I wasn't thinking!! I actually thought going to Adventureland and camping was going to be fun! It was hot as H*LL. I get tired more easily and the sun just sapped it out of me. Then their new waterpark was horrible! Very crowded and no shade or chairs, and you had to pay for the lazy river tubes. This was no wonderful inside Wisconsin Dells waterpark. Then we went to the camp ground at night and there was nothing but huge mud everywhere! It would take 15 minutes to walk to the bathroom. (Not good for me at all with the side effects of chemo on my digestive system.) And it was so humid at night. I sat there and then realized how was I going to wash and prepare all the bottles of breastmilk with no hot water and area in the bathroom. So thankfully as I started to cry my Jedi knight in shining armor came to the rescue and we went next door and got a hotel room.

The next day we went to the Iowa Science Center, that was GREAT. The kids, even my oldest, loved it. We also went to a pizza place and some mom came up to me out of the blue and asked me if I homeschooled. And was super nice and encouraging about it and the fact that we have 6 kids. I never hear that! Usually it is just the opposite. She mentioned how she breastfed her children. So awkward moment! What do I say??? I said I breastfed too. Hopefully she didn't see the bottle in my diaper bag.

Now back to preparing for chemo day on Tuesday. I dread it. Please just let me continue to recover and have good days.

Wednesday, July 28, 2010

Chemo Round 3-cancer wouldn't be bad if you didn't have to do chemo

Yep, it is still kicking me around hard. You know how when you get a rx from the dr and the insert lists all these horrible side effects but thankfully most people do not get any of them or maybe one or two little ones??? Well, on this FolFox chemo when I look at the list of possible side effects on the insert, I can check off everyone! Cancer would not be so bad if you didn't have to do chemo! My friend who had cancer gave me these great buttons--cancer sucks, chemo sucks, piss on cancer (you know the one with the boy pulling down his pants and peeing on something). She also gave me a livestrong bracelet. I never really understood the saying on that bracelet till now. You really have to try and livestrong to get through this. I don't know how strong I am. I really feel like a wimp. How do old people with cancer do this? Even worse, how do children with cancer do this?

So the side effects are horrible breaking me down. Of course all the drs can do is just throw more drugs at it. I did some, it didn't really help. So I figure now why give my body more drugs and will not take all these extra drugs that don't really help. I think for me it will just be sleep, sleep, sleep and not eating on those days following chemo that helps me the most. I know not eating sounds bad but it is my body telling me not to, it can't handle doing anymore than it already is to get out the poison and breakdown the chemo that trying to breakdown food is just too much. Chemo is a diet for sure. Even after the worst days I still don't eat like I would. My head says eat on the "good" days. And I will want something certain to eat but then when I eat it, it just doesn't taste that good or I can't eat much of it. So far chemo is only good for loosing weight. Heck, will it even kill the cancer? Not all of it, that is why horrible surgery. And the cancer will probably come back and will still be hiding in my body somewhere.

So on my "good" (as good as it can get) days I have this strong need to nest and get everything ready for the bad days. It is weird, I feel like I am 9 mths pregnant with nesting syndrome! And I also feel this need to do great and new things with the kids on those days. We went to Chicago and now we are going to go to an amusement and waterpark. I guess it is because what if I get sicker and have no good days and can't do nothing. I have to convince Jedi to do this since we don't have lots extra for this but I can't help it. I feel like everything is now or never.

Friday, July 16, 2010

Bonding with my baby

With bottlefeeding I can see how easy it is to get disconnected from your baby. You can let others feed them, they feed themself as they get older or you can buy these products that let you prop the bottle for babies who can't hold their own bottle. I feel those products can be dangerous and have no place except maybe in rare situations--mom all alone with triplets. I WANT to feed Trooper ALL his feedings except for those few times when I am too sick. Princess keeps asking to help feed him but I keep saying no, I am supposed to hold and feed him just like when I nursed him. I also like to warm up his breastmilk. I figure there must be some good reason God designed our milk to be warm and not cold. I am also thankful that we co sleep and is something that cancer hasn't changed. The other night I couldn't fall alseep since all I wanted to do was look at him. He was cuddled up in my arm close to me. It was so peaceful and pure happiness.

Wednesday, July 14, 2010

Chemo Round 2

This will be long since I haven't been able to blog for a while.

It was round 2 of chemo. I feel like I am in a boxing match. Of course, I am getting beat up very badly, chemo is winning. It totally knocks me out for a at least 5 days and it took 7 days to feel back to normal. It is like night and day between the way I feel. I can't help but feel like chemo is making me sick and not making me better. Someone (who has cancer) told me her first reaction was not to do chemo and had to be talked into it. Now I know why. I feel like they are bringing me to the edge of death to kill the cancer. They say by chemo round 3 or 4 most people will not "recover" and still feel bad the whole time. I hope I can at least stay on this feel horrible for one week and then feel normal for a week until the next round. I then could run around and do all the things I need to do and prepare for the bad week.

The kids, the 4 oldest, are off to cancer camp for a week. It stinks that it is during my good week. I wonder how it will effect them being around other kids with parents who have cancer. I still don't think they "get it". I know there is at least one child there with a mom who is terminal and other gets who definetly get what going on. What will they say to my kids? Will this change my kids? I want them to understand in one way but in another I don't want them to have to know about horrible things.

Ok, it is time for my long, loud scream since I can't type what I want to say.
I am sure there will be more of those.

Trooper is offically on solids now.(He is 10mths now.) In the last few days he is totally into them now. This is good even though my amazing friend found a super pumping mom who is giving Trooper more than enough milk. This way no matter what happens I have a cushion, he can eat food. I am still not dried up, though I am not engorged or leaking, I can still squeeze a drop out. I wonder when I won't be able to do that?

I cut my hair- it was a disaster. It was a horrible haircut. I can't type/talk about it or I will get mad again. It only looks half way normal when my hair is wet. At least I got the money back for it. Don't go to Great (slash, make that Bad) Clips in Moline.

Sunday, July 4, 2010

Back to Reality

Went to Chicago this weekend. Walked the museums and zoo. Felt so normal, well, except for the bottle feeding part, that was a huge pain. Though, I was normal bottle feeding since that is all I saw and I fit in instead of being the only breastfeeding mom I would see. I walked around thinking I feel so healthy (it was a good day, no chemo effects). How can *I* have stage 3 cancer? Do I look like I have stage 3 cancer? Tuesday is coming and it will shock me back to reality, yep, I have stage 3 cancer and I get chemo and all the horrible effects that bring. I am so dreading it. It will be hard to walk in there now knowing how awful it will make me feel.

I saw part of the movie Stepmom (movie about a mom having cancer and leaving her kids to the new stepmom). I had seen it before but seeing it this time was way different. Too real.

Thursday, July 1, 2010

Crying and crying

Trooper cries everytime he finishes a bottle. It is not because he is hungry. It is because he still wants to suck. He leaves the bottle in his mouth and cries. I have now switched back to slow flow nipples to try and make it take longer to get the milk so he can have more comfort sucking. I have tried and tried the pacifier (2 types), my thumb, my finger, his finger and thumbs and still he will not take it. He wants to comfort nurse so bad. I know this. I can feel this from him. It breaks my heart.

I have tried to sleep with him for several nights but it still hasn't worked out. He cries and cries despite me trying to comfort him. Jedi has to hold him sleeping in the recliner still. I want to cuddle with him so much.

His new cry is old to me now since he does it so often.

He is taking about 40 oz of breastmilk in 24 hrs!!! He still will only eat one jar of baby food.
Thanks to Jennifer for bringing yummy homemade baby food for Trooper.

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.

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.


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.


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.


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


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 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.