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.