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!!!!!