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)

Cancer Treatment Illness Induced Freakouts (that sounds medical)

Cancer Treatment Illness is what started this downward spiral. On Wednesday I woke up so tired and feeling icky and then later my upper stomach hurt really bad. I knew it wasn't the "good" kind of sick --wish I had the flu, stomach bug, food poisoning--who wishes for that?? Only a person with cancer. I knew it was what I call cancer treatment illness, when you get sick and have side effects from the cancer treatment you got. I have been sick with it several times since the end of treatment but this was worse than the other times. I didn't call the dr, why??? just so I can go through all the horrible tests to either A) have them tell me it is in fact cancer treatment illness and not much to do but live with it or B) the cancer is back. Neither is something I wanted to hear or do. Plus I get labs drawn on Tuesday and if it was bad they would call before my dr appt on the 10th. So in the mean time not eating for 2 and half days helped and I am finally physically feeling better but emotionally it has gotten to me so much. So feeling physically horrible at least you don't freak out because the pain is on your mind but now since I am feeling better, I have had several freak outs. My husband didn't help me remember to take the sleep medicine so here I am still awake at 7 am, lest you think I actually got up at 7 am to write. My husband, as I have said before, is still in la la land. I have tried to push him to help me or acknowledge the cancer and even see if he will be there for me. He has failed on that. He is not like the other caregivers I read about that remind the cancer person to take their meds, have you eaten/drank today, how are you feeling physically/emotionally, want to talk, or even the simple how are you. Cancer has not drawn us together but far apart. I just have to keep telling myself I understand that and why he is doing this because I am sure if I was able to act like that I would to and would love to be able to not care about it. I am also sure the several freak outs have to do with my up coming dr appt. So you might wonder what is a freak out, for me it is thinking about the future, thought of doing chemo again, or doing surgery. I still can't even fathom the thought of surgery. I cry, can't stop and can't even catch my breath. All I know is--- look at how horrible I am doing now and think how much more horrible I will be if it came back and know freak outs will be even more in number if it comes back. All I pray is-- God, you know and see how bad I am doing please don't give me anymore! I can't do it! I pray He has to understand, he will just have to understand my thoughts and actions through this. I am not strong anymore, I am not like those other cancer people. Though I did read one cancer blog that totally sounded like me at times and told it like it is so at least I know I am not the only one who thinks this is shitty and says so. Now I pray I can go to sleep. I will get tired and fall asleep as the kid soon wake up, I will just let them ruin the house and eat cereal all day because husband will work all day on Saturday and I will be too tired because of no sleep and it takes a lot out of me to not freak out in front of them, perhaps that is why I freak out so much at night or when alone.

Been over 3 months

I can't believe it has been over 3 mths since I wrote here. Every day I had thoughts that I wanted to put down but didn't. Mostly tired or too busy and hoped a forced break from writing would help me. Still my emotions are like a roller coaster. I am afraid this stupid cancer has permanently caught me and will not let go. I live from one test to the next. I did an update in Sept on facebook that my round of tests was normal and then more tests at the end of Oct were also normal. The relief of the news lasts only so long and has faded about a couple of weeks ago as I get closer to my next round of tests at the beginning of January. The fretting and horrible thoughts come to hope that I will get relief on Jan 10th and have that emotion last for some weeks. It is like a drug one seeks and a high that doesn't seem to last very long.

I had gotten a bump in feeling less tired back in the middle of the summer but now it has leveled off and I am not back to normal in that area. I was hoping to continue on feeling less tired. Every ache is a question and a scare. It is also an instant flashback to how the chemo and radiation mad me feel. Oh how I hope I don't have to do it again. I feel like my body will never feel normal again. Every day I am glad I didn't do the surgery and think of all the things I wouldn't be doing and how much more emotionally damaged I would be. The nerve damage is still the same in my feet and the cold winter makes it worse but my scooter is a huge help and I am so glad I have it. I have had a hard time sleeping. Even being so tired yet still can't sleep. I have had to resort to taking something to go to sleep a few times a week and even with that I still stay up later than normal. (See it is almost 2 am as I am writing this and I took the medicine!)

It has been a hard few months of deaths all around me, people at the cancer group I go to and message board I frequent. It really hits hard seeing others my age with the same dx go and read how it ends. Though hard I can not stay away from it. It is the want for knowledge of what is to come from those who are there that I find comfort, hope, and sadness all rolled into one.

I still haven't written my "books" for the kids. I really wish I would. I know I would find comfort knowing it is done, but it is still hard to do so I will wait to do it a little longer.

I still feel in between two worlds, cancer and non cancer. I am not either, though the drs would pick cancer since I didn't do surgery. I do find myself slipping into the old ways which I hate. I hate the common place thoughts that do not manner. I wish I didn't care about my house being a mess and the unending list of things to do that don't get done. It feels stupid to care about such things. What does it matter? But that is how one is supposed to think when they do not have cancer, they care about those things. But shouldn't I just say who cares, throw it all to the wind and live for today, but I am torn to live how I used to live and live like I am going to die sooner. It still boggles my mind when some will say little things probably don't get to you anymore (since you have bigger things to worry about!), but, no, I think this everyday little sucky things sucks AND AND AND I have cancer so it just sucks worse. I will still not say I am cancer free, only God knows that, and I will not say I am a survivor, you can say that at my funeral if I die of something else.


At the end of October my family was chosen for a "memory" trip. It was WONDERFUL, a most caring thing to be given. It was 12 days to try and leave the cancer behind and truly make a memory for our family. Though the cancer did come on the trip with intrusive thoughts here and there, overall it was great. It did have a sense of the "last time" that would make me sad. I showed the kids the beach. It was amazing! I grew up in Florida and had forgotten how amazing the beach is. They were wide eyed seeing it. I collected pine needles, spanish moss, sea shells, sand, dirt, sea water. And put to memory all the things I saw and did. I soaked up everything and trying to hold onto it forever. I hope my kids do. I saw my family wondering if it would be the last time I would hug them since we are so far away from Florida.

On the breastmilk front, Trooper still has milk! I again counted it all up and it should be done around the middle of January. Still it amazes me and so thankful. And still a day doesn't go by that I wish I was nursing him like I was supposed to. I wish that I didn't get to know what I lost with him and it makes me sad to know some others don't even know what they are losing when they don't nurse their baby. I never thought bottle feeding would turn me into more of a nursing activist than I already was! And I am now such a huge supporter of donor milk and what an amazing gift it truly is for moms and babies who need it.

I am so thankful for the prayers that continue for me. It is too hard to plead and beg for the far off future so I can only think till May. That would be 2 years and a huge milestone if I make it there without the cancer showing.