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.

My Last Baby

My last baby is turning 2 yrs old today. He will be my last baby (since chemo/radiation destroyed me) and his turning 2 makes it real and final. Looking back the one thing I forever regret is being meek, embarrassed (can't exactly find the right word) about being pregnant. Having my children has been the greatest thing in life, I hate that I showed anything but joy to the world over each pregnancy and it stings now with my new reality. With each pregnancy I felt the disapproving culture that says more than 3 (heck even more than 2 if you had a 1 boy and 1 girl) was wrong and too many kids. So I always tempered my joy and let myself assume to the world, "oh, yes, you're right too many kids, oops". But inside I was happy to be having a another baby. And when I was so sad over my 2 miscarriages the world looked at it as a good thing. And now I wish I had displayed overwhelming joy especially knowing how hard it was for us to get pregnant, 4yrs for our first and then 5 yrs for our second and ending up where I am now. I guess this is why I am now so blunt on facebook (and here) about things, I don't want to cave to the culture that says be a certain way about things and I for sure want people to know how I feel if only for me that I was not fake and I said what I believed and not have any regrets.

My baby was perfect timing for me and I am thankful for him during this whole cancer trip. It was not good timing for him and it has been a hard time for him through this and he has experienced a whole different babyhood than the one he should have had because of this stupid cancer. He kept me from staying in a dark hole by him looking at me and needing me. And yes my older children needed me too during this time but it is different looking at him and after him, he is truly helpless and needed me and he just gave me nothing but joy, peace, and hope when I looked at him. I am also glad I didn't find out during my pregnancy with him (I had symptoms during pregnancy) and glad it wasn't until he was 8 mths old that I got dx. I had at least that wonderful ignorant time and I appreciate and miss that time so much that I would not have wanted to trade it since I can never go back to it.

Life is the greatest gift and coming in the form of a baby is so miraculous and we should be happy for one.

************************************************************************************

Now my results! I had my second biopsy since deciding no surgery in February and it came back "no evidence of malignancy". I know I am shocked and the drs too. Now I can sort of breath until October for the next round of tests. It saddens me to know others have not had the same road and some have already had a recurrence at this same point. My results make me happy for the moment and the good results are always tempered with the reality of cancer.

PTSD trying to forget about cancer

I have not been back to Gilda's Club (cancer support group) for many weeks now. I have been trying many things to "get over" this cancer and that was one of them, especially since a friend there was taken away. After an email and a call from a friend there, and I do miss them, I decided to go yesterday. I had not expected to see the husband of the friend that was taken away. It threw me for a loop. Remember my previous post/plan to just think of her as just someone I don't see anymore and then seeing her husband and her dog (she always had her cute lap dog with her) and her dog went to the chair where she always sat. Just another reminder that she is really gone. I also met a another with colon cancer who is in her thirties she was dx right after she gave birth and her baby is close to Trooper's age. It still shocks me every time I hear of someone else with this cancer.

Going there does not make me feel worse than when I do not go. It does not matter how far I run or how long I stay away from cancer places it is always there. At least there I do not feel alone. I really feel like I have PTSD (post traumatic stress disorder) from this. It is so weird to describe and I am not sure if you haven't been there you might not understand. I don't think I would if someone told me this. You would think she is done with treatments right now and tests are ok right now so be happy (I am for that) BUT with that now comes the hitting of what you have just been through and how that has forever changed you and the mental and physical scars that are left with you. And you can't get back to where you were before this.

There is this pressure to live life perfectly (since you have cancer and you might die), live life to the fullest, no regrets, do all you want to, be happy, don't sweat the small stuff, make every day/moment count yadda yadda yadda and all those "great" sayings. And of course I fail because real life gets in the way and doesn't care you are trying to live some great life now and just sucks you back down in the middle of stupid things.

Ok, so I give up on that since it is impossible and try and just go back to the old life, yet really I can't but I try and pretend and then I am mad about that since it really is only pretending and I can't pretend for very long. Cancer always comes to mind, and having dr appts doesn't really help! FYI, will be having another scope on Monday, totally caught me off guard when the dr said that, so now stressing about it, and not the procedure but the results of it. I really feel like I live dr appt to dr appt saying your ok for right now. Well, at at least that is what I say! The dr of course reminds that I have cancer. yeah, because I might forget I have cancer!

It is like this movie I saw (b.c.--before cancer) about a soldier who comes home from war. He is messed up mentally and his friends and family just don't understand. They think he should be happy that he made it out of the war alive when his friends didn't and why is he so messed up and why can't he be back to normal what happened to the person they knew.

I am happy for how I am doing right now but this is *still* hard to deal with and what I may have to deal with in the future.

I think everyday when I wake it will be ok and I will be alive for my kids and then it feels like I am asking and praying to win the health lotto. It just seems too much to hope for and too much to ask for. Why would I get the lucky health ticket.