No rhyme, no reason

A recurrence for stage one after 4 yrs remission, chemo not working for another, ongoing side effects and vague test results waiting in limbo for another. They do not deserve this, they did everything right. I mad at that, it makes no sense. That is why I get scared, that is why I continue to feel down. I did not and do not do everything right. They did all the recommended treatments, healthy eating, exercise, supplements, positive attitude, prayer. If it can happen to them with all those things done right it can happen to me. Cancer seems to never be over till it is over. I hate that I feel down. You shouldn't be down says the stage 4, I wish I was stage 3 in remission, I would be happy, you should be happy. The non cancer person, you should be happy your are in remission, I would be happy if it was me. Ugh, I want to be happy and normal but that cancer is lurking and waiting to catch me again. I am doing my best to be better but it is a fight every moment. I play mind numbing games to not think about cancer. (Thank you Words With Friends players and Facebook Tail Towns Friends players!) The religious person might say focus on God and pray, but I am not in that place and thinking about God just makes me think about meeting Him one day (death) and being away from my kids. I have been extra down because of something that happened a couple months back and it is thrown me again down to the ground. BUT I am doing my best to be better for my kids, they are what keep me going. Perfect words for what I feel: After you live the darker side, face the death of dreams that died I've been there, out of hope and out of place, walking on one thread of faith Giving up and giving in, coming back from where you've been, still trying, to fight the demons, give them hell, heal the wounds, tell yourself that you're living Even when it feels like everything is broken it is holding on and letting go We face the fire and take the burn and live and learn We take what we are given and someone we survive Life is for the Living, Ryan MIchaels Band

Don't Dance

My little Princess has been taking dance. I love watching her. I love dancing and used to dance. Her class was canceled because of July 4th so I thought I would do a "dance class" at home with her before her next one to refresh her memory of things. That was a big mistake! I limit myself with walking to short spurts around the house and sit back down before it starts hurting bad and the only other walking I do is this long walk (to me!) in this huge building for my son's gymnastics. I get really sore just has I reach it but then get to sit down. As I start "class" with her, I had my (only shoes I can wear) Crocs on and could see that was not going to work to show her things (and it felt so ungraceful). So I put on an extra fluffy pair of socks, the kind they sell in the winter. My feet immediately hurt because of wearing no shoes, something I ordinarily never do but I wanted to do dance right. It hurt the whole time, even just standing there. The class lasted about 15 minutes. It hurt to put pressure on the ball of my feet or to even point or do any dance moves correctly. It was a mess I couldn't teach her anything! I went to the bathroom and cried. Since I have limited my walking (I have gotten fat!) and it lulls me into this false sense that I am ok and maybe I can really just walk and be normal so I tried to be normal and do something normal, something I REALLY wanted to do and realized I can't do it like I used to. At my last drs appt. they resigned the papers for the handicap parking. There is two boxes to choose from-temporary (6mths) or permanent. Each time I have always checked temporary thinking it would get better and because since I walk so little it feels like it is not that bad. But from that dance class I see how awful I am and no wonder I don't walk, not walking makes things seem ok, no pain. And now my feet have rebelled against me for making them move and have been in constant pain for the last 4 days, just screaming at me to remember don't walk again, don't dance again.

Still good tests!

My latest round of tests came back good! A big relief every time.

Kerry on

My friend who was outgoing, funny, very kind and caring and a load of fun and only 42 died. The cancer got her. It doesn't seem real. I want to keep it that way. If I don't go to her funeral then it won't seem really real. She knew I might not go to her funeral. I will see when I wake up tomorrow if I will go or not.

2 Years

It has been 2 yrs since the horrible news. Still feels like yesterday and still trapped in cancerland. It is amazing I made it 2 yrs without a recurrence considering what the doctors said and I didn't have surgery. I do still feel like I am on a timeline since I didn't do surgery and knowing the high recurrence rate for this cancer. It sort of feels like I only have 3 years left, they always talk about chance of survival for cancer in terms of 5 yrs. It is like you are glad to have another birthday year but with each year that passes it feels like you are closer to death. And an update on my post from one year ago---none of my sisters have gotten a scope done.

I did get my biopsy result back and it was clear too, so next round of tests are end of June. I wonder when can I relax and think I am in the clear. Can I ever be in the clear?? I so want to stay like this. It freaks me out and I have a mini melt down thinking about doing chemo again or having surgery and of course not being here. I want it to stay this way so so so much. I have been thinking about getting a tattoo that says "warrior" and my children's initial but not sure I am up to the pain part and of course the $$$ part. I really think I am a warrior after all this crap and the continuance of this crap. I have to fight every day. I know I am strong but I just wish I didn't have to be, it is so much work to stay mentally strong. I don't even really think about going back to doing breastfeeding help. I am still in no mind to do that "professionally". It would probably be wrong to say to a mom who wants to wean "Imagine you had to wean tomorrow because you had cancer." or to a mom bemoaning the fact that she's up again with her baby in the middle of the night "You have got to have more energy than me since chemo and radiation really sucks the life out of me more than a baby sucks milk out of you." or "I cherish every night waking since I don't know how many more I will have." I know totally rude and mellow dramatic but can't help myself. I really just like being with my kids. And staying in my bubble. My friend from the cancer support group is not doing well. I really hate what it is doing to her. I haven't really talked to her now (she is more home bound lately and not coming to group), I don't want to bring her down, you know how "cheerful" I am about cancer. I will just tell you all this now, when I am towards the end, don't worry about bringing me down, and I will want to talk about the end and all the crappy stuff, though I know probably most people won't want to. To my cancer friends, be a warrior--- a person who shows or has great vigor, courage, or aggressiveness

Still beating the odds

I totally forgot to post on here about my results (I did post to facebook) that my latest blood and ct scan still show me in the clear! I still have my scope and biopsy on April 23 but I just think it has to be ok since the other tests came out good, right?? Isn't the cancer supposed to show up in the blood or ct first? But then I get worried and think they will be taking it from the actual cancer sight, oh no. I just keep saying it will be ok, it will be ok. I am almost to the 2 yr mark since I was dx in May. I know for all of you it may seem like a million years ago and ain't she back to normal yet and stop thinking about this cancer all the time but to me it still seems like yesterday. It has been my goal to make it to the 2 yr mark without a recurrence and to show those drs I did it. I know they didn't think I would make it that long. Then can I make it to year 3?? If I do, I really what a case report write up in some medical journal! My doctor friend said to me "Aren't you glad you didn't have that surgery!" EVERYDAY!! I think I am glad I didn't do it. Even no matter the time I have left.

Tests mean stress

It's that time again- blood work and ct scan. It always gets me stressed and in a bad mood. Today I go for the ct scan and know I will feel like crap all day from the stuff I drink and iv contrast they give and it will mess my stomach up even more than it is already. And I have to drive my son 1 hr to practice and sit there for 3 hrs and then drive another hr home. I hope I don't throw up. I hate that my husband never comes to any appts/tests/even chemo with me. He doesn't even call me. He is out of touch with this. I am left to shoulder it on my own. So I pray on Tuesday when I go to get the results of these tests that it will be good since I will be by myself and I will have to go home to a full house of my kids since they will be home for spring break. It is so hard to forget about this cancer when something is always reminding you of it! So I have had more freak outs in the last few days than usual. Pleading prayer to God all is well.

Not a Survivor but a Warrior

I write that because (and I think I may have written about this before) I don't like being called that. It does not describe me. A survivor is someone who has survived something. I do not know that I have survived cancer. That is scary to write and think about. But it is reality. So many at the cancer support group I go to are people who have the cancer come back. Many others with cancer also don't like the term survivor. I read that some use the term warrior. That is a term I much more identify with and it sounds empowering and says what I do. I do feel like a person at war and fighting with this cancer. It is still a daily fight with it. I know to others it may seem like such a long time ago that I was dx and I should be back to normal by now. They have no clue, I didn't either before it was me. It still seems like not that long ago and still I can not get away from the cancer. I am getting better though. When I was first dx the feeling was like death. Death seemed so so close. And now I know that is because I was closer to death than before my dx. But now finally I don't feel like I am about to die at any moment. Now it is just a feeling of I will be here for another 3 yrs. That is what is in my head since they talk about 5 yr survival and I am coming up on my 2 yr since dx in May. Then thinking of that freaks me out-- it is too little time and I wonder if I can make it past that number. In general, I am emotionally doing better, only one "freak out" a day, better at fighting the bad thoughts and able to sleep a little bit better but still tire easily. The thing that has me down is the continued nerve damage in my feet. It hasn't gotten any better. I still try to put on my normal non croc shoes and can't even keep them on more than a second. And walking still sucks. And that lack of walking leads to my weight gain. I hate it. I think I just need to stop eating since I can't walk.

2 other people who blog that I follow and who have this stupid cancer, one passed and one in hospice. Another friend trying to prove the drs wrong that she will not be gone in the 2 mths they give her. :-(

My next round of blood tests and ct scan is the last week of March and will get the results April 3rd. Prayers wanted. Thank you!

My baby weaned

My latest round of tests went well! Still in remission! Next round March. How long can I make it? I hate that I still have break thru freak outs. Will they ever go away? Probably not since I feel like the only way to not get them is for the impossible to happen--a 100% guarantee that the cancer will not be back.

My baby just drank his last donated breastmilk on Friday night. He was down to one 3 oz bottle at night time. I was worried how Saturday night would go and he was fine. I again must say how happy and grateful that my baby was able to get human milk for this length of time which is the normal length of time for babies to get human milk. It saddens me when I hear of babies who get no human milk and when people do not understand the value and importance for babies to get human milk. I just don't get how people can think cows milk meant for a baby cow that is highly processed with artificial things and not strerile and put in a can is the same as fresh human milk. I am also glad that while I gave him the bottle of human milk I tried to make the bottle feeding as much like breastfeeding as possible which is for all babies no matter what is in the bottle. Babies are supposed to be held when fed and not prop a bottle. A link to describe more of that--

http://www.kellymom.com/store/freehandouts/bottle_feeding.pdf

(you'll have to copy and paste that, don't know why it won't show as a link)