Cancer caught me.

My baby weaned

2012-02-05T23:25:00.005-06:00

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)

2011-12-31T06:51:00.004-06:00

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

2011-12-25T00:34:00.004-06:00

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

2011-09-08T11:40:00.002-05:00

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

2011-08-25T23:36:00.002-05:00

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.

Taken away

2011-08-11T00:37:00.004-05:00

A friend was taken away. I knew and I was told that it was close. Her dr was correct in the time he gave that was left. But still I just couldn't really believe it would come....because she looked physically ok, but her face showed a sadness, a far off stare the last few times I saw her. Her visitation was today I did not go, her is funeral tomorrow, I will not go. I hope that doesn't sound mean but I just can't do it. If I went I would have to be strong and cold as not to break down and flip out, which would be a real possibility, just being there and seeing it all and hearing it all, it is too close to me, too real. Not going allows to have her be a friend I just don't see anymore rather than a friend that I see that is for sure gone.

I have only been to a few funerals in my life. When I was a young child my grandpa died. At the time his death didn't effect me hugely, I thought he was old and thought that is what happens. Now I know he was young, only in his 50's and died of cancer. What did effect me was that in the room over from his viewing was a service for a little girl. That was the first time I realized kids die. My next funeral was for my Granny. I was so sad she died because I had really knew her for a long time and she had made a huge impression on me. Though I was sad I was so happy for her because she told she would be going to heaven. The other funeral I went to was for a young mom who died of cancer, she left 2 little boys. It still didn't hit me, I was sad for them and her but it never made me think it could be me. But now having cancer has made me see it could be me and it is too hard to face that and see it with my eyes and not flip out since I know I am so much closer to it than any of the other times I went to a funeral. Before cancer, you know you can die but now you know in a much more real way you can die, you feel so much closer to it and I just would rather look away. And yet every day since dx I can't escape not even one day that I don't think about death. I now wonder how people can just not even have it cross their mind for days and months on end. I just can't seem to get back to that place when death never entered my mind even when faced with a funeral.

To my friend taken away, thank you for sharing your last year with me.

To Lisa, the Dancer

2011-07-21T22:07:00.003-05:00

I am posting this to Lisa, the dancer, in hopes that she may see this post. I have been reading your blog and have tried unsuccessfully to post a comment on your site. Not sure if it is me or you have comments turned off. Lisa, the dancer, I stumbled upon your blog and was so sosad to see yet another young woman have this horrible cancer. From your postings you sound strong and determined and so mature beyound your 26 years. I was really upset that you have had a recurrence so soon after finishing treatment. I was dx one month after you were and that is always on my mind. I just wanted to let you know you are not alone and I wish you nothing but the best and that you can continue to find strength and support to fight every day. I frequently read (hardly post though) on colonclub.com it is a great site with other young people who have this stupid type of cancer and I found it helpful to read and get information. Another good blog to read is http://imsorryforcursing.blogspot.com/
(Sheri, I hope it is ok to share this!)Thinking of both you daily, Sheri and Lisa!

My family

2011-07-06T08:31:00.002-05:00

My family, except our two dogs not shown ;-)

Life is for the living

2011-06-18T22:37:00.003-05:00

A song someone shared with me and wanted to share:
http://ryanmichaelsband.com/fr_lifeisfortheliving

So much going on since I last posted, have wanted to write but so busy living through the good times and bad thoughts that still plague me. BUT I am living! Hoping all can be old! Now I look at old people and find it absolutely amazing that they reach such an age!

2011-05-24T10:50:00.001-05:00

I really hate not being able to talk or think about the future without crying.

Sisters, it has been one year

2011-05-17T14:36:00.002-05:00

It has been one year since that shocking day of getting dx. On that day it wasn't even a thought that crossed my mind that I could have cancer.

So this is how I have decided to mark the day I got dx with cancer:

Ok, this is the official written notice to my 5 sisters that they need to get a colonoscopy. My hope is to scare you and make you think AND make you ACT. This tactic is used all the time by the medical profession to get people to DO something about their health and I feel this may be the only way to get you to ACT. This is only done out of love and care and me wanting you all to avoid what I am going through. Just so you know I am not just picking on you, there will be a letter for my kids since they are now also high risk and will need to get checked at around age 26 yrs too and I will have an equally strong letter for them since the reality is I have a high chance of not being here when they are that age so I won't be able to drag them to the dr and will have to rely on a letter I write and my husband AND hopefully you all to tell them to get it done and you can tell them you had it done and you can be there for them.

First, I am thinking about how I would respond to the news if this whole situation would have been reversed and it had been one of you all and you said to me that your cancer doctor said to tell your sisters who are within 10-15 yrs of your age to get a colonoscopy. My first thought is no, nope, yuck, no way, why me, I don't need that, it wouldn't happen to me, I hate doctors, etc etc etc I know I could come up with a whole bunch more reasons not to get one, but you get the point. So I understand you too saying no. So go ahead and say "no" right now and then take a break and then *really* think about it. I know I would have had to have time to come to the conclusion to get one. And heck I was having symptoms and even then had to push myself to get one so I know how much easier it is to say no right now when things are fine.

So, now, step two, go and read my whole blog despite the warning at the top of my page that clearly warns people not to read it since it is so horrible horror reading. So I know maybe as you read it you will say "I would handle the cancer dx so much better than Kim." And I hope you would, but the point is that even if you would handle getting cancer so much better than me the point is that it STILL SUCKS and no one should have to go through it even if they "handle" it well. Also, as you are reading know that I have left out SO MUCH icky yucky stuff that goes along with a colorectal cancer dx and the treatment they give you for it. Just use your imagination or go read colonclub.com and pick any thread dealing with bathroom and pain and sickness to get the full story or you can call me if you want and I can give you the gory details.

Now to give you some facts: It is recommended for ALL my sisters, even you Sheri who is the youngest, to get a scope. I started having symptoms at age 36 and they say this cancer was probably there as early as 26-28 yrs old! So imagine if I had gotten a scope at 28 yrs old they found something so very small and not even cancer yet, but what they call precancer and take it out and it doesn't even hurt you to do it and then you are fine! Well since I had no warning and NO SYMPTOMS at age 28 and the symptoms didn't start till age 36 it gave the precancer lots of time to grow to big cancer that is stage 3 (hey there are only 4 stages in cancer and stage 4 being the worst) and my odds stink now compared to someone finding a precancer or even a stage 0 or stage 1. So here I am ringing loudly the warning bell for you my sisters so you can get checked *before* stage 3. There was no one to ring the bell for me, lucky for you, you have me. And I would hope if the situation was reversed you would badger me into getting checked because you cared and didn't want me to suffer. I don't want anything bad to happen to you all. I look at all your pictures and posts on facebook and see the happiness and normalness and pray it never ends for you. I wish I had been able to catch this at age 28 before it turned into cancer. Reasons you may say you don't need one---you don't have symptoms--this type of cancer doesn't always have symptoms and sometimes not tell it is later stages. Symptoms that could be associated with this--bleeding, stomach aches, stomach bloating, constipation, diarrhea, anemia. Risks that make you higher risk--smoking, overweight, having a relative who was dx before age 50 yrs. For me I didn't have any symptoms until it was already stage 3 and I didn't have the risk factors at all and look what happened to me.

I know the ick factor of it is probably THE reason you don't want to get one and like I said before I can totally understand that. But here is some info to help you understand it better and I know right now you will not believe me because I know I would not have believed it either but I am telling the truth. Mostly, what is the bad about having a scope is the *idea* of it and what is actually means but the *actual* process is easy and nothing horrible. So just remember it is just the thought of the scope but not what actually happens that is bad. The good is you will loose weight! Take my advice and it will be even easier to have one. For example, if you are having your scope on a Wednesday then on Sunday eat very lightly, Monday stick to even lighter just little snacks, then Tuesday is your "prep" day where you will flush every thing out and you are not supposed to eat anything. This is the day you will thank me and be so glad you didn't eat full regular meals on Sunday and Monday. Just imagine how much more would come out if you had. Then on Wednesday you can eat after the scope. I easily loose 5lbs, The drs of course say you can eat normally all the way up to Tuesday "prep day" and you can, but you will have more time in the bathroom and you won't loose as much weight which I like to loose weight since I have to do this. Also, most prep days say to start late afternoon, but I think it is better to start early so you know you will be done by bed time and you are not waking in the middle of the night having to go to the bathroom. Also, most people will say the drink they give you is horrible tasting so do not drink the prep mix most drs give you! There is an easier tasteless way to do it. You know I hate to drink anything tasting horrible, just ask Dee. So my dr gave me the tasteless mix and little pills smaller than a tick tact (since you also know I have a hard time swallowing pills). Both are over the counter so no Rx needed, just go to Walmart/Target/Walgreens buy Miralax (also comes generic) and Duculax Laxative (not stool softener and also comes generic). Basically you will mix the whole bottle of Miralax which is tasteless in water or a non red juice and drink it all day and you will take several pills with it. I can forward to you the copy that my dr gave me so you can use and/or show your dr in case they say you have to do the yucky tasting stuff. Don't skip doing the scope because some stupid dr says you have to do the yucky stuff, just say ok and then do this prep I told you about. Of course if you really want to you can drink the yucky stuff, probably what will happen is you will go and get the yucky stuff the dr says and then you will taste it and then run out and buy what I told you to. Believe it or not this is the worst part---having to stay home all day and go to the bathroom lots, just keep thinking about the weight you are loosing! So you are probably not freaking out about this part of the scope and it is the actual scope that you are freaking about. I know I was. But you do not even know anything happened to you, you are completely asleep and do not remember anything at all. No pain, no memory. If you have had surgery, do you remember your surgery and being operated on? Nope, this is just like it. They give you great drugs and make sure you say you want to be put out for it, because some people (crazy) want to be awake for it, but not me and probably not you either. I can tell you later what drugs to specifically ask for. During the procedure they will see if there is any precancer tumors and they can take it out right then if they see anything. Again, you would not feel anything during it or afterwards. That's it! If this scope is "clean" and they didn't find anything you can wait about 3yrs till another one. And you should have another even if this one is clean because one clean scope doesn't mean you are fine for the rest of your life. Just like why you have a pap smear every so often you need this done too especially since you have a very high family risk now.

Another question---if I had breast cancer the same recommendation is for my sisters to have a mammogram at age 26 yrs old, would you have a mammogram? Tamela said yes she would get a mammogram yet she said no to the scope. So sorry I didn't have breast cancer (I have a whole blog post on how I wish I had breast cancer vs this cancer) so I have this stupid stigma cancer and the only way to detect it is a scope. But just remember this scope is NOTHING compared to all the horrible stuff I have been through dealing with this cancer and the fact that I will die sooner (and in horrible pain, the drs like to always point out to me) so just remember that and be brave and suck it up and get it done. I wish I was in your place, I wish I could have had a warning bell. You do so take advantage of it, don't make my suffering in vain and that I went through all of this and it saved no one.

Look at your children and look at your husband and imagine saying "I know I could help protect myself from becoming like my sister Kim who has had to put herself, and her family and children through horrible stuff and she will most likely not live as long as she thought she would but I am just not going to go and get a scope done."

Please respond, I would love to know what your thoughts are even if it is to tell me you are not going to get a scope. I will answer any questions especially since your local family ob/gyn dr may not know much about my cancer and screening recommendations and may give you wrong info since you are "so young" since most people think of this as a old person cancer. You really need to see a GI dr also known as gastroenterologist who this is what they do and tell them your sister got this at 36 yrs old and was already stage 3.

Link to a female GI dr in Pensacola, of course there is other male drs who are GI drs but thought you would want a female one.
http://westfloridahospital.com/physicians/profile/Dr-Lakshmi-Gopal-MD

OK so now there is no excuses. I have done what I needed to do and it is now your fully informed decision as to what you will do. I wish I had been given a chance. Remember, this post is done in love.

It's been a couple of weeks

2011-04-30T02:12:00.002-05:00

since I posted here. I did post on facebook how my last cancer blood test and ct scan was good. I was a horrible bad mood right before the ct scan. They call it scanxiety. The thought and knowing I have to drink this horrible crap that makes me throw up and feel sick for 2days makes me like that. And then the waiting for the results wanting to know but not wanting to know.

The dr asks me how I am doing. I say, "I guess that will depend on what you say about the test results." he says, "They are fine except white blood cell and iron down but normal after having chemo." and then so quickly only enough time given to me to let out a sigh of relief that he turns the talk to surgery. Have I thought about doing it anymore? I say, "Of course, EVERY SINGLE DAY I think about surgery and how I would not have been able to do it. EVERY DAY something happens that shows me that." I am so trying to be happy and I am about the good test results but it is so hard when the drs are not so happy about it, like it doesn't matter that they came back good. They can't even relish in the fact that the tests come back good.

I hate that I can hardly remember the "before" anymore. It is hard to glimpse for even a moment the "before". What I hate even more is how I feel emotionally worse now the longer I am into this. I thought it would be the opposite. The bad sadness I felt in the beginning would get less but it hasn't. I think what has happened is in the beginning I was running on adrenaline and chemo and now I have crashed. The chemo has left my mind to think since I am not always so sick as a dog and the adrenaline has been used up since isn't the worst supposed to be over since I am not doing chemo and radiation now? Now I can think and farther away from treatment I get I feel like the closer I get to it coming back and starting all over again. My blog title says it clearly. I do really feel like cancer caught me and now it won't let go of me and I can't break free from it.

My hubby is still in La La Land. It is amazing all the things we have NOT talked about since me being dx. All the things I need to talk to him about, all the things I need to say and have him say to me. I forced him to go to the last dr appt. He did not say one word during the appt. It was just like when I go to the dr appts by myself.

I am still having a very hard time being around friends because I just can't do that without melting down. I hope you all can forgive me and understand.

The good: My oldest son has been very helpful to me, he has watched the baby so many days when I have been so so tired and needed sleep and helps with so many chores. My Mr. Clean and Punpkin sons have been just so happy and I love it and their smiles. My Hercules son just amazes me with what he can do and learn and how tough he is but saddens me with how I can see he knows too much about me and cancer. My daughter is just a miracle and a little mommy to the baby. My baby is not acting so much like a baby anymore but more like a toddler exploring everything and not a day goes by that I don't think about him nursing. As of now I do really think I have enough donated breastmilk to get him to his birthday when he turns 2yrs old. It is an amazing act of kindness that made that possible.

I still feel the prayers of other and that is what truly keeps me going and I hope they never end.

Downer day

2011-04-14T09:03:00.003-05:00

You just can't go by looks or time. I hate cancer! When will they find a cure??????? I just met a 29 yr old woman one week ago. She had just been dx 2 weeks with stage 4 breast cancer. She looked GREAT, YOUNG. She was JUST dx. She was fine how could she have cancer she seemed to think. She sat on the sofa wide eyed and shocked but ready for the fight ahead and like it would be all ok. I believed her, she was handling it all better than I was at the same dx point. I thought what a long road ahead of her. Then find out she died. It rocked me. I hate cancer, how can it do this??? None of the people I meet, the stories I read make any sense. It makes my head spin.

I have to write all I want to say to my kids. I have to write everything I want to teach them. Because no matter how good you look and the time the drs say they give you don't matter and something can just happen. Having cancer makes me feel so completely unsafe. It feels like a ticking time bomb except you don't see the numbers ticking down but you do know it is less numbers than the average person and it could go off at any time.

I met another person in real life with rectal cancer. She was older woman than me. She had been dx stage 3 like me, did the yada yada yada like you are supposed to do, they told her she had no cancer and then 1 yr since her dx it is now stage 4. Drs won't tell me I have no cancer despite all the tests coming back clean since I didn't do surgery like they wanted me to do. I wonder if it is harder to have them say no cancer and then just in a short time have the cancer come back. For me it would be. For me hearing it is back seems harder than the first dx of cancer. I don't think of myself as not having cancer even with the clean test results 1) because the drs don't think of me as no cancer 2)it seems like cancer just hides like a game of hide n seek just waiting for you to find it, it never really goes away in many cases it seems. So I consider mine hiding and I and the drs just can't see it right now. I hope it is longer than a year from my date of dx before I see it again. It is just one month until the day I was dx.

This whole post written through tears.

Neuropathy makes you feel crazy

2011-03-21T16:55:00.004-05:00

This post comes because I left my house and went out into the world for a long day and was reminded again of how things are not normal.

This sums up the neuropathy that I have from the chemo that I got. It is funny that the dr didn't tell me I would have this after the chemo was done.

http://cancerissofunny.blogspot.com/2010/04/what-does-neuropathy-feel-like.html

Since I don't go anywhere I can sort live with it since now I am so used to being like this. At home I only walk very little and then can go sit down anytime I like. It is when I go out it hits me, Oh, yeah, I can't walk like everyone else and like I used to. The wheel chair is a blessing and a pain. Great since I can be out without a time limit but bad since I get these looks (I think because I am young and remember I LOOK SO GOOD!) but then I can't go out by myself since I can't push the kind of wheel chair I have really well by myself for long distances (I have the neuropathy in my fingers too but not as bad as my legs/feet).

My neuropathy makes me feel like my shoes are too tight, it makes me feel like things that are not there, it makes me hurt, it makes me feel nothing at all, it makes touching hurt and weird sensations, it makes me question and not trust what I feel or don't feel. It mostly makes me feel crazy. I hate walking slow, I hate walking like a duck and an old person, I hate looking normal and walking weird, I hate the looks, I hate that I don't know when this will and if this will go away. I pray this is what I will have to deal with, I will happily complain about having this. Can this be the only thing I have to deal with, pretty please.

This is just one of the hidden side effects of cancer that people can't see. I have other hidden side effects but would rather not share since they are icky and I do try my best to keep them hidden but it is hard and such an interference with my daily life. People can see and know that after the chemo, after the radiation, after the surgery there is a whole bunch of never ending side effects physically and emotionally that keeps you.

Chemo and radiation and surgery, the gift that keeps on giving except it doesn't always keep the cancer away.

There's always something unexpected!

2011-03-18T00:25:00.003-05:00

Can't things ever turn out how you think they will??

Nope!

Thought I was just going back to the gyn for a follow biopsy-- but it didn't end there! First, she was GREAT! I think she gets where I am coming from. After I told her about the chemo dr appt (thought she should know I wouldn't be getting a CT scan), she got me in RIGHT THEN to another chemo dr! Amazing! But of course it scared the heck out of me since I was not prepared for that at that moment. And I have been dreading trying to find another chemo dr. It is so draining to actually do it and even just the thought of going to another dr appt is really getting to me. Appts and drs are so draining and such a downer on me. I just want a break. But no break. (I have 4 dr appts for the month of April!)

Thankfully, I had my friend with me who is on the short list to sainthood for coming to a super early morning appt and then staying even longer for another unexpected appt all the while with a toddler in tow (who was perfect). Thank you Saint Natalie (and Anna)!

Even though the new chemo dr appt went ok it was very, very stressful for me. The good news is he would give me a ct scan and proper follow up. I also learned that I was discussed at the tumor/cancer board meeting by all the drs, so all the local drs now know what a pain in the *ss I am! LOL The difficult patient that won't just follow along with them. So good to know how much harder it would have been to find a chemo dr if it wasn't for my gyn dr taking it upon herself to get me to see one. Plus, they would know immediately that it was me (even though they don't use names) since who else would have a rare cancer at a young age. Turns out my new chemo dr actually questioned why I was having this "full surgery" and perhaps I could do half the surgery. Nope, they all jumped on him for that comment. Oh, no, you don't do that, she's a T4 tumor!

So here's the big curve ball thrown during the unexpected dr appt and the last thing I was thinking when I went to meet him. His idea is to call the GI drs and ask if they would do half of the surgery. I am thrown for a loop when he says this and thrown into panic mode, and I am still in panic mode whenever I think (write) about it. Just when I thought I had made a decision about surgery now it could be back on the table. I did ask the GI dr if he would do half of the surgery way back when and he told me no but of course it was ME asking, maybe another dr asking is different.

Well, now I am just in an unknown zone waiting for a biopsy result, waiting to hear what the GI dr said about half surgery, wondering what will I do and wondering how I could do it all. And basically feeling like my life is always falling apart and just wanting a break from this all for a little bit. No, a long bit. It stinks just as one of my kids is getting counseling over this stupid cancer thing and the counselor had just reported "I think he is doing ok and now with everything settling down too it will help him", yeah, right, now it could be possibly thrown into more chaos again. My family's world is a mess and stressful and never stopping. I need a break but you can't get a break--something always happens.

So done

2011-03-10T22:20:00.005-06:00

It's been a whole pregnancy since I have been dx with cancer and I feel like a pregnant woman who is at the end of the pregnancy and is ready for it to be over. I am so ready for cancer to be over. I sick of dealing with it. I am so sick of going to the doctors. That always brings me down and back to reality. Around everyone else all seems well, look at all the good test results. You all can be happy about it and rejoice. But I go to the doctor and there is no rejoicing just dread from them. Cancer will never be over unlike a pregnancy that will end with a happy little baby. Cancer never ends and when it does end, it really is the end.

So why the horrible downer of a blog post. Because of the horrible chemo dr appt. Just when I think all is well, I made my decision to not have surgery and planning all the follow up with the gi and gyn and now all that was left is to go to the chemo dr follow up appt and then he re hashes the no surgery decision. He veils it in "it's your choice" in his fakey voice and condescending tone. It's my choice to not have surgery but now I will not get the follow up that any other person would get since I didn't have surgery and that I can't promise him I would have surgery if it comes back. Well, so sorry if I can't promise you something about the future, I don't do that. I just don't get this dr. I would not treat a mom I was helping the way I have been treated. If a mom comes to me and I know she has low milk supply (and she knows it too). She says she wants to increase her supply and nurse her baby. I tell her a,b,c,x,y,z is what she needs to do but she only wants to do a,b,c. I don't belittle her. I tell her why it is important to do it all and the consequences of not doing it all etc but I let her decided what she wants to do and I support her best I can even if it is not what I would do or what I think she should do. It is her decision not mine. She will have to live with that decision. I don't. She knows what she is able to do. I don't tell her to promise me she'll do x,y,z if only doing a,b,c doesn't work. I trust this mom, I respect her, it is her life not mine.

I am sick of it all!

I am down about another mom who has this stupid, stupid cancer. She is starting chemo again. I remember saying give me more chemo in response to I would rather have chemo than surgery. Well, when I heard she was going to have to do more chemo a horrible dread feeling came over me. All those feelings and memories of the chemo came flooding back. I hate that she has to go through this. I hate knowing that might be me too. I just want to have cancer be done but it feels like it never will be. I will always have to deal with this.

I want to "move on" and get back to "normal life". Yeah, right, that can never happen. I am trying to not be down and trying to not think of cancer and what it means but it always comes back to my mind. The worst is the thought of not being here for my kids. I HATE that thought, that is the thing that gets me every time.

Ok, let's at least end this post on good things.

I really am so thankful and happy with how well (say a prayer) things are going with the cancer being in remission right now. So despite my rantings know this. It's just those dang drs who keep bringing me down so it is hard to stay happy.

I am also SO SO SO SO SO amazed that Trooper still has breastmilk from a super fab mom who has continued to provide milk for him. Trooper had been sick twice and I am sure he would have been in the hospital if it wasn't for the milk she has given to him. It kept him hydrated and provided calories when he wasn't eating anything. I just want to say it over and over and over again about what this has meant to me. It has been huge and brings me such peace and comfort.

What a GREAT weekend!

2011-02-20T23:03:00.002-06:00

I got the results back from the biopsy--- no cancer was found!!! It is amazing!!! I feel so grateful and blessed, a weight has been lifted off of me and I feel like I can see hope.
Because of the results (and the blood tests and the PET/CT scan and scope) I have decided not to do the surgery. As you know this is still going against what the drs recommend even though all the tests are good. I will have intense monitoring every 8 weeks to check for any reoccurrence. (I have gotten 3 drs--oncologist, gastroenterologist, gyn-- who agreed to follow me even if I don't do surgery.) I have a pelvic ultrasound scheduled for next Wed just to get another baseline so they can compare things as time goes by, just like they will do with the PET/CT scan pictures. And I will have cancer markers (a blood test) the beginning of March.

Also, thank you for your prayers and please continue to pray for me since this cancer has a very high reoccurrence rate and I pray I get time.

That was Friday and then on Saturday I went to my son's gymnastic meet where he did wonderful, of course! He got two 1st places and one second place and 3rd place all around. He also had another personal best score. This was a big and hard meet so this was a good showing.

Also, in an exciting college men's gymnastic meet Saturday night our Iowa Hawks won against a higher ranked team and beat them by a huge margin and posted many high scores. It was an awesome way to end a great weekend of great news!

I feel so great right now, like I can see light and sun. I hope and pray it lasts.
Please continue to pray. Thank you!

Trooper's Milk-breastmilk, since he is not a baby calf :-)

2011-02-15T12:13:00.004-06:00

Here is a picture of all the breastmilk I was able to pump in a few weeks time before I had to wean my baby and do chemo treatment for the next 7 months. I remember when I was pumping it took forever to get 2 oz and yet I had a full supply and a baby who was solely on my milk. My baby could get the milk out but not the pump. I remember thinking, at first, wow look at all of this milk that I saved up but then quickly realized it would only last a couple weeks.

As you know I was so blessed to get milk donated for my baby by my friends. I have had one mom who was able to give me a constant supply of milk as she even still feeds her baby. I am SO SO SO THANKFUL for every drop of it! I had thought I would save my milk that I pumped for when I had run out of all the donated milk and my milk would be the last milk he got. I called it his "weaning milk". Well now beyond my wildest expectations I STILL have donated milk for Trooper! It is amazing and such comfort that he has gotten something I could not give him myself but others gave it to him knowing how much it meant to me and for him.

Trooper is now 17 months and still loving and drinking his milk (and of course eating solids). Some might think he is too old or why does he still need it. If I didn't have cancer I would still be nursing him. It is recommended for breastmilk be given by the World Health Organization for at least 2 years (with solids). The benefits of breastmilk don't go away at some certain age. Recently Trooper got sick for 6 days with a high fever, no other symptoms, wasn't sure what was wrong, he was just tired, cranky, didn't eat solid food. That whole time I was so glad we still had breastmilk for him during this. It is easy to digest and provided much needed calories and nutrition since he wasn't eating. Cows milk would have been hard on his system and water wouldn't provide anything except hydration. I felt so comforting to know he had the breastmilk and I am sure that it kept him out of the drs office or hospital because he was still able to drink breastmilk.

So now since I still have donated breastmilk and my milk is getting "older" I will start to use up my milk for Trooper and then go back and use the donated milk since it is "newer".

Of course nothing is ever simple!

2011-02-11T14:14:00.002-06:00

Had the scope today, thought I would know for sure if I would do surgery or not based on that. Nope! They did a biopsy, they had said they were not going to do a biopsy. So now I will go and do the pre op set up ALL DAY LONG on Valentine's Day Monday since I will not have the biopsy results back by then.

Valentine's Day will be horrible spending a day at the hospital.

What's happening, at least at this moment

2011-02-09T12:41:00.004-06:00

After sitting with this decision more days, I still feel like I am not going to have the surgery. I went back to the local GI dr and he agreed to follow me. So first thing is I will have a scope on Friday to get a base line of where I am. So unless this shows something horrible I sticking with the no surgery decision. This was the first dr visit that I have had that the "d" word wasn't used. He didn't try to talk me into to doing surgery or anything. Maybe it was because of the way I presented myself, who knows. He sounded very interested in doing the scope after seeing the pet scan results and the what the other dr had said about the exam he did. I think he is wondering if it is really that good of results or not.

So anyways the new plan is see chemo dr every 2-3 mths for blood work and scans, see GI dr every 3 mths for exam and 6 mths scopes (not sure totally he will look more into to see how often on scopes), see GYN dr every 2-3 mth for exams.

I really hope the gyn dr will take me and feels comfortable watching for cancer because she was super nice to me and helpful other times (she was the one who helped turn pumpkin), she is also knowledgeable and supportive about other issues that are important to me and I trust her. So the GI dr has talked to her about what is going on with me (I haven't yet) so we will see next week when she is in the office if she says yes.

For now I will stick with my same chemo dr even though we have had some rough patches with him. The GI dr thinks (and others) think he is one of the best in the area.

So after having all this lined up Iowa City GI dr calls to say they need to change the surgery date (it was penciled for Feb 25) to early March. Uh Oh! Deep breath I have to tell him what is going on! I hadn't canceled the pre op set up appts yet since I want to wait till I do the scope and make sure everything looks ok and then I would cancel it. Well, so I let him talk first and then I tell him all of this. And then a pause. And he continues almost if I was going to still have surgery. He then says "Am I nicer, see I didn't make you cry or get upset" "I'm trying a different approach with you. Does it make you want to have surgery more or less now?". I let out a huge laugh! It was too funny! I think the gyn dr must have talked to him. Now I KNOW how much he must want to do my surgery! And plus the gyn dr said the gi dr is so excited to do it. At least, I figure, I am in great hands should I ever do surgery!

Travel=sick, but it was worth it

2011-01-31T11:28:00.002-06:00

Went to see my son's gymnastics meet, it was great! He did super! 2nd place All Around and got an amazing 15.2 on high bar placing first place and also got 2nd place on parallel bars and floor and 3rd place on pommel horse and rings. It was his best meet ever!

Then I got sick just like I got sick when we traveled for Christmas. Just like last time I was the only one to get sick. So it makes you worry, is just regular sickness or cancer sickness. I going with regular sickness. I am probably just still weak immune system from chemo and radiation. I know I still don't feel 100% and still tired.

I have an appt with the local GI dr to see if he will follow me if I don't do surgery. Hopefully he will and that appt will go well. I am making Jedi go with me to it. That appt is Monday Feb 7 and I still need someone to watch Trooper and Princess from about 12:30-3 pm so if you can please let me know.

I am also looking at getting a second opinion from a chemo dr about whether I would do more chemo if I don't do surgery. So far my current chemo dr says no he wouldn't do it right now.

Michelle your comment about your birth hits home. I did "crazy" "wrong" "against medical advice" things with my pregnancy and birth with Pumpkin.

Story of Pumpkin, my forth child:

I am not a standard of care person. I never go with the flow easily or without research! When I was 39 weeks pregnant with my him I was told he just turned breech and would need to be induced and csection. I read and looked and asked questions and got a non standard version (where they turn the baby while still inside of you) despite being term and a big baby at 8 and half lbs at the time and I was not induced after they turned him. The standard thing then would be to be induced as soon as you turned the baby before the baby had a chance to turn again. So even then he didn't come for many days later and I was over due too. I know many would say risky and crazy, but I did not think that after doing research and having an experienced ob who does this and I also accepted the need for an immediate csec if the version had complications or didn't work. I guess I just like knowing about options outside the box and knowing lots of information so I can make a decision and I take responsibility for my decisions. And I had an internal knowing it was ok to do what I did.

Some may think this is different, but it isn't. To the medical people all those decisions I made with pumpkin was life and death decisions just like this is. Though I haven't gotten to the "internal knowing" yet with this surgery decision. We'll see if I get there. So my hope is to find a dr who will work with me and follow me and to watch out for if the cancer gets worse and then we do something more about it.

So how did those birth decisions turn out? As you know he's my 6 yr old terrifically cute boy!

Give thanks to God and pray for me

2011-01-27T07:59:00.004-06:00

First I will tell you how the dr appt went on Monday. I got only see the gyn oncology dr He did an exam and found/saw nothing not even radiation damage. Normal healthy tissue! Again great news! But to the drs it does not matter! Still same surgery, not even less invasive surgery. This makes it so hard on top of the PET scan results. How do I not even have radiation damage?? I just got done with radiation. AND that machine did work, I had the pain and skin damage while I was doing it to prove it! He laid out his plans for what his part of the surgery would be. Yuck hated listening to it. It would be easier to say yes to surgery if the pet scan was worse or the exam found something. I know all the medical scientific reasons to have surgery---it could be too small to see, cut it out where it was to help it lessen the chance of coming back, it will be worse if it comes back. The medical info and standard of care is--do the surgery. 4 drs told me this.

They penciled me in to do the set up for the surgery and penciled me in to do surgery Tuesday Feb 22.

Tuesday morning I woke up and had a full blown freak out and melt down. At least I waited till the kids left for school. My mom wanting info on the surgery so she could get her paperwork in order so she could take leave. I was like mom you don't understand I don't know if I am going to have surgery or not! I can't decide. I then talk to my sister, she calms me down. She understands why I don't want the surgery.

I decided since the going back and forth was driving me crazy I would take a whole day like I was not going to have surgery. And then the next day would be a whole day of yes I am having the surgery.

On Tuesday as soon as I started to think I would not have surgery I started having calm and relief. I felt like I could see a future. It seemed like I could plan and think and do things. I had not felt this way at all since I got dx. And even though I knew it could be short, I felt ok at least I have now and right now my body is good. I felt like I was giving my body a chance. It was also the first real time I have had to absorb the good news and like the good news of the scan and exam. I felt intensely that God had answered every ones prayers for me. WOW that was a huge feeling that covered me completely and the drs didn't even care that I had done so well. The drs had taken that good news away from me. God cared and answered when I was horrible all the way through this. I only had begging and where are you prayers. I want people to know that God answered their prayers. He was working even though I couldn't feel him and I felt alone. I now it was because of YOUR prayers. THANK YOU from my heart for praying all that you did for me. I also realized this whole time I had only been thinking of this decision medically. Yes, medically I should have this surgery. A dr can do that, they are supposed to look at something medical, a narrow focus. They can't look at the whole picture, they don't know me, they know medical. It is up to me look at the whole picture and take the non medical into consideration. I also realized to not have surgery means I have to work hard to live. I would have to search out a dr who would do proper follow up on me. I knew I would need prayers from everyone, will everyone still pray for me. I also know I want to live differently I don't want to be my old precancer self. I know I can't be that anyways but also I don't want to be how I have been during this cancer treatment time either. It will be a challenge to do this. But if I am to not do surgery I have to be different so I know that it was worth it and I changed. I also thought about how I would feel if it came back. I have been smacked upside the head that life here on earth is not forever, yeah we all know that, but I FELT it. And I know no matter what, life here is not forever and that is how it is no matter what I choose.

I was supposed to wake up Wednesday and say I am having surgery for the whole day. I just couldn't do that. I didn't want to do that. I didn't do that. The the GI called me (remember how he called me before). Instant horrible feelings comes over me. He said the other dr had penciled me in for surgery, am I having the surgery? Ugh. In my head I think I am not having the surgery. Though I tell him I don't know. I ask him do you want me to do the set up (long set appts for this type of surgery) if I don't know and I very well could say no surgery. Just like usual no definite answer from him! I ask again, I might not do surgery right now I don't want to do it. The conversation ends with me doing the set up and him knowing I still may not do surgery. Is it a good thing to do the set up for surgery? I sort of feel like it will force me to have a day where I think I am having surgery and then I would know for sure if I still felt this way I knew this is what I should do. Please pray that I know what I should do. Does God still write things on stone tablets to tell people what to do? LOL

Give THANKS TO GOD and PLEASE PLEASE PLEASE still pray for me.

Off the merry go round, I am dizzy

2011-01-24T23:16:00.003-06:00

I am trying to get off the merry go round of yes surgery, no surgery. I am so so tired from this. Thankful that my friend that came to the dr visit today. Thankful for my friend that listened after the dr appt. Tired will post more later, must go to sleep. My only peace is sleep and stops the merry go round.

Another hard day, up, down, up down, yes, no, yes, no

2011-01-23T15:04:00.003-06:00

Woke Saturday morning with a continuance of the previous days hardness. The day literally was like a roller coaster. Up down up down up down yes no yes no yes no ALL day long. Yes I can do surgery yes I will do surgery no can't do surgery no will not do surgery. I was so upset at having to make this decision. It seems like gambling. I hate gambling. I hate games of chance I like games where what you do determines your outcome not just luck. So far it has seemed like just trying to determine which option (surgery or no surgery) would be luckier. BUT knowing you can't know your luck beforehand! All of cancer really seems like a luck thing, it seems to have no rhyme or reason. Also, in my head is thinking of how I could cope with doing surgery. I have come to the conclusion I won't cope well with it at all afterwards, even Jedi knows that. I am glad he knows that. Basically it comes down to do this horrible radical surgery ---the drs, studies even say this about this surgery!--- so you can have a *little* bit of a *chance* (remember the whole luck thing that no one can predict)compared to having no surgery but the price of this little bit of chance is HUGE because the surgery is radical and has 30-47% complication rate. It seems to be all about luck, which way will the coin fall for me. So for me this is replaying in my head all the time since it seems impossible to come to an answer, the right answer, there seems to be no right answer. I like a clear right answer.

Sunday morning comes and I awake thinking of a friend, how great she is, how I want nothing bad to ever happen to her. I feel like today maybe I can be off the roller coaster for awhile though I know I will have to get back on soon because an answer has to be given soon. Remember the ticking clock ticking down.

Hard day

2011-01-21T13:42:00.002-06:00

Thursday was a very hard and busy day. I just wanted to crawl into a hole and veg out but you can't life still going and you still have to go and do just like if you didn't have cancer. It is like living straddled between two worlds. Dealing with cancer in between planning for my sons birthday who turned 9 yrs old that day. Inbetween teacher conference (emotional because they talk about the future--talking about the future always gets to me) and dr appts and horrible phone call I am supposed to go about and buy the cake and birthday gift and set up the bday dinner.

Don't know where to start but just what happened first.

Learned a friend with my same cancer had bad news. I can *feel* that so deeply. It saddens me so, it feels like it could be me and what she says are my same thoughts.
She is better than me and yet she gets this news!

The GI surgeon calls *me* personally himself. At first hearing his voice you feel flattered that an important dr calls you but of course mostly it is never good when that happens. He called to say don't come to my appt on Monday if I wasn't going to schedule surgery! He said it was a waste my time. I said I didn't think that it was a waste of my time but do understand from his prospective that it could be a waste of his time. I don't think I said that disrespectfully but an understanding of how frustrating it must be for him to deal with me asking questions and not going with the flow so easily. I mean I do understand on a less life and death scale of how it is frustrating when a mom is asking me questions and not following recommendations that you think could help them. I also told him it has helped me and does help me to talk and learn about things to help me be ok with this surgery. Doing this helps me emotionally (which is just as important as being medically ok with it) be ok with this horrible surgery and horrible decisions that I have to make, at least I tried and I feel like I am the most comfortable I can be with all of this and doing these things will help me emotionally *after* the surgery. Ugh!!!!!!

I was so glad my Jedi was there to hear this phone call because it was pretty unbelievable and very upsetting to me. I think the dr knew Jedi was listening since he said "I do know you will die without this surgery." He knows using die and death doesn't phase me but does Jedi. I had been looking forward to that dr appt on this coming Monday since I felt like it would help me make the big decisions: have surgery or not, if I have it, whether I have it in Iowa City or not. I was also to take my GREAT dr friend with me who has been an angel and real person to help me understand things and let me vent since she unfortunately understands all too well about cancer.
We also disagreed on when I would have surgery, if I decided to have it. He wants the first week in Feb and I want to wait till Feb 20. I want to see my son at his gymnastic meet. Cancer will not take that from me since it has had so much else and will continue to take so much even after surgery. (People seem to think after you have surgery and chemo/rad you are all better and done and back to normal---NOT!)

So that phone call was left with the dr saying go to the gyn dr appt on Monday and then ONLY if I want to schedule surgery come to his office to see him.

(Later I will do a hilarious post about how breastfeeding counselors should use the same communication skills as drs to help new moms!)

OK so now on to the good news. That is what it is. Good news I have responded so well to chemo and radiation from my blood and scan test results me chemo dr said.

My blood cancer marker continues to be normal and still dropping even when within normal range. It has been normal since round two of chemo way back in the summer.

"I see no evidence of abnormal tracer accumulation throughout the neck, chest, abdomen or pelvis to suggest metastatic disease or recurrent disease. No abnormal adenopathy visualized on CT portion. The liver demonstrates homogeneous distribution without focal abnormality. I do not see another focus of focal tracer accumulation along the colon either
No evidence of disease throughout this study, although the study can be somewhat limited as patient had inability to drink full amount of oral contrast. I still favor that this study is relatively benign. There is a very minimal tracer accumulation about the rectum with just above background with maximum SUV of 2.5 to 2.8 No foci of significant tracer accumulation to suggest definite disease."

It is good news, right!?! Yea! I responded so well to everything! Now let's go rip me apart. It is hard to do surgery with this news but then shouldn't I do *anything* at a *chance* to live. My head is spinning at all of this and my friends news of spots on her lungs after doing everything right.

Cancer has no rhyme or reason, it almost seems it doesn't matter what you do!

I know some may be thinking it is just surgery do it, my surgery is not just the regular common surgery for this cancer, places only do about 3-5 a YEAR, it is more extensive than that and much more of a risk and high complication rate and a huge life change at a "chance", a "only hope" and those are the words that the studies use! Since they know how radical the surgery is and the risks it carries but it is the only thing they can offer. If you are reading my blog and have cancer and want more info I would share privately with you the icky parts. I know I have tried to find someone to talk to who has had this surgery and it is difficult, have only found old posts so far. So if you had this surgery you know what I am talking about please post a comment if I could talk with you or comment if you want me to talk to you more about this if you are facing the same decision.

Since I just can't decide it is really getting to me now. I hope Monday (at least talking with one of the surgeons!) I have a better idea of what to do. It is like a roller coaster, one second, minute, hour, I will do the surgery the next I won't do the surgery.

It especially is hard when I see people with reoccurrence of cancer after doing everything the dr said and I just wonder if it even matters at all. It just feels like doing the surgery is not to really better my outcome but just to say I did something, it is just about doing something.

PET scan equals forced solitude

2011-01-19T00:14:00.002-06:00

I have now had xrays, ct, mri and pet. And they all suck accept the xray. I am not good at taking the yucky crap they make you drink. I can handle iv's and shots but not drinking yucky stuff. What they also failed to tell me for today's PET scan is that I would need to stay away from children and pregnant woman until noon tomorrow since I am radioactive. Oh, that would be easy for a mom of 6 to do! As much as the PET scan sucked to do, I had two heroes swoop in to help me. Natalie to watch Princess and Trooper and Molly to provide a place for me to spend the night. THANK YOU A MILLION TIMES!!!!!!!

One thing with getting a PET scan (at least with mine) they made me be in a totally dark room with no reading, no ipod, no phone or anything for an hour and half. You are just supposed to relax and veg out so you don't have your brain use energy or sugar or it go there, or something like that, not sure how to explain it correctly. Anyways, ALL I did WAS use my brain! I couldn't sleep or relax I just thought things I didn't want to think about. So I wonder if this still worked or not since I was using my brain and not able to rest it.

Well, with all that time to think, I thought about my post about being away from my kids and if it was selfish or not need/want time to yourself. I came to realize that it is not selfish because you are able to go to them and they are able to come to you at any time. And unlike right now I am having "me time" and yet it is horrible because I can't go to them nor them to me.

I had gotten these recordable children books that I had yet to find the quiet to record me reading the story. Well, I brought the books to me to the hotel and thought this will be great I will finally get to do this for them since I have the quiet. Well, I start to read the stories and start to cry, very hard to read them. They are "touching and emotional" stories-- Guess How Much I Love You and All the Ways I Love You. It took me much longer to do this and was much harder to do than I thought. Just like when Princess brought me the book Love You Forever. Before cancer it was one of my favorite books to read to the kids, it made me happy to see such a wonderful story of a child's life and how they grow. Now it just made me cry when Princess brought it to me, I look at that book so different. I always thought that would be how my life would be with my children and now it may not be that way.

This feels like a mini prep to the "if I have surgery and I am not there". I think of the surgery like a trial run of what it would be like if I was gone because in the hospital I can't just go to them and see them nor them to me. Jedi will get to see what it is like to be without me and that makes me so sad.

An amazing thing did happen when I came into the hotel room. There was a raccoon on the bed! Stuffed animal! Trooper's new nickname right now is raccoon since now he is climbing and getting into everything and curious and eating all starts of things just a like a raccoon. The kids watch Billy the Exterminator (a tv show) and commented how Trooper is just as mischievous like the raccoons are on the show. It was amazing to see this stuffed animal on the bed and remind me of my little raccoon.

Crying over no quantity

2011-01-17T02:36:00.003-06:00

I have think I have cried so much that now I really hate it! I hate crying, I hate having no control over crying!

I absolutely hate the thought of not being here for my kids. I hate that thought creeps in so much and that it hits me at any moment and anything can make me think it.I was organizing the school books and thought I should keep this stuff for Princess and Trooper for when they get older and that made me start to cry. I heard the song "I Loved Her First" on the radio, completely made me break down. Yep, that song is supposed to be about a dad giving her daughter away on her wedding day and I thought I would not be there for it. I didn't have a typical wedding. I always joke that Jedi never asked me to marry him. He just came home after a deployment (he was in the Navy) and said we are going to get married on February 9. We did on the carrier by the ship chaplain with my sister and his friend there. A white dress, yes, but not a real wedding dress. No honeymoon because he was off to sea again. I have big plans for my daughter if she would get married, it would be so fun to plan with her. This is just the one thing I can't stand, the thought of not being here, it drops me every time I think of it, which is a lot.

I don't want to hear make the best of the time now, nope! I can try as I might but time is what I need. Just as when Jedi would be deployed so much when he was in the Navy. It wasn't about making the best of the time we had together when he was home, it was really about knowing we needed to be together and it sucked not being together. Heck, even though we would try to make the best of the time when he was home it was hard to do. There was such pressure for it to be perfect and do everything before he left. And that and just life in general makes it impossible to have it be great and we would end up in a fight because of the stress of it all. People say it is about quality time, over quantity of time---usually they are saying this in reference to parents being with their kids since they work----well, BULL it is about BOTH. You NEED quantity and I don't have that and we all know how tough it is to make it be quality because things get in the way of that no matter how hard you try. Funny how I have this time with my kids and yet since being dx I have spent more time away from them than ever before.

Tonight me and my friend talked about needing time to ourselves. Taking a hour in the morning when it is quiet or late at night to think and chill. I hate that I talk that way, yet I still need that time, why do I need that still???? Do I need it or am I being selfish in the middle of this to take time for myself? I know I said I hate talking that way, but I like talking that way too because for or a moment it is talking like I did before cancer. Joking how you need to get away from the kids. Away from the kids. I will be away from them.

Sweat the Small Stuff

2011-01-15T12:30:00.002-06:00

I had someone when I was a kid who said don't sweat the small stuff. I have heard/read that people who have a cancer dx (or other life changing event like that) don't sweat the small stuff because you can see a bigger picture and know what is important. But as you can have guessed, not me! LOL! I DO see a bigger picture and DO know what is REALLY important BUT the small annoyances really get to me more than they ever did before. I just think I *always* have the big cancer annoyance and so the little life annoyances really make me more mad since I feel like that is just too much when you already have one big thing getting to you all the time. It is like you just can't get a break on anything! You get hit from all sides.

Way overwhelmed

2011-01-15T12:17:00.004-06:00

Way, way, way overwhelmed!!!! It is not one thing, it is *every* *thing*. At least it is not every second and about a few times a day that things are just too much and I break down. It is too much to think about and deal with. I can't have my "before" life back, I know that. But I can't get good at this new life. It is only just *being* in this new life. *Doing* something about this "after" is too overwhelming and gets me down. It is easier to just "be" than "do". It is easy to think about it but very hard to do something about it, mostly because it is hard to decide what to do about it all and then there is all the work to do it, that is if I could ever decide what to do!

Editing this post to add something I just thought of:
I woke up this morning like all the mornings since having cancer *treatment*----tired, ready to go and lay back down. And today when I moved from my futon bed (I sleep in the living room since stairs are too much) to the recliner and I sat there checking out the internet and watching Jedi fix breaskfast for the kids I had thoughts of all I need to do and things in my *head* sound do able. And THEN I closed my laptop and posted the upper part of this post and realized as I went to do these things that my *head* says I can do, I can not really do them, I am so physically tired. My head tells me one thing but my body tells me another. I feel so lazy physically. My brain is go go go and then I move and then remember it is too much. The walk I do from, one side of the U of Iowa Field House wears me out and I am glad to sit once I get there to watch my son (and it doens't help that the nerve damage, it hurts my feet to walk long ways). So I really think being tired physically effects my brain too, making things just seem to overwhelming because it will require me to do something. My brain is trying to fight that and say I can but then my body rebels and says no you can't.

Time

2011-01-12T16:30:00.004-06:00

I was, and still am, a cheap date. Burger King was fine, Olive Garden is fine dining. I think that has to do with my childhood. Me rebelling. I remember as a child wanting white bread and chef boy r dee. Instead it was wheat bread, or 9 grain or rye fancy breads, butter beans, it was real nice restaurant, and real meals not junk food. I will never forget my apple healthy birthday cake!

Me and Jedi never really went out lots, we are home bodies, love playing games together--cards, scrabble, backgammon. Me and Jedi always knew there is a time for everything. A season for things. There was a time for us before we had kids and we knew there would time for us again after the kids were grown. And we knew that when we had kids, especially when they are under 2 yrs old, that it was time for them. They needed us and we are older and understood and could wait, it was their season, not ours. Our priority is them. We believe it was designed that way.

We used to, *used to*, talk about when the kids are grown how we will sell the house and buy an RV and travel around and see the sights and visit the kids. That thought kept me going when it is tough being a mom and when I missed just being a couple. Now it seems that thought of the future is gone or just too far off to even reach.

I feel like I will never be old. I used to wonder what would I look like when I am old. I want to be old, wrinkles and all! My wish is to make it till 60, at least the kids would be out of school. Though maybe not married, ok have to stop that thought from going on, because they will have a life after school that I would love to be there for. Especially for my daughter if she became a mom.

I feel now that I am on a time limit, a ticking time bomb. Before, even though you know you could die, it didn't seem real nor anytime soon. I hate not being able to talk about the far off future, it just seems weird to me to do that now.

A Birthday

2011-01-09T14:27:00.002-06:00

I was invited to a birthday party for a friend, she has terminal cancer. She really didn't think she would make it to Christmas, she keeps telling me that. I swear, I know I have said this before, but still, it amazes me how it is *every* *little* thing it messes up. Something simple as a birthday, a birthday gift, a birthday card. Maybe it is just me, I know I over think everything, and over anylze things but still, I go to get her a gift and there is cancer messing with it.
What to get, I think of me, I think if your going to die it seems a waste for some *thing*, things don't matter you know that for sure now, a thing you won't use very long, a reminder of how you don't need this "thing", who will you give this thing that is given to you. But then I think if you get something that is used up (ie food, candle, etc) it makes you upset too! It means you don't need some *thing* that will last for a long time because you won't be here. Ugh!!! I know just enjoy whatever it is, but it is hard since cancer seeps into everything. Funny thing though, it was the easiest birthday card to write to her. The words came easy. The tough part was finding the right birthday card. All the words didn't fit, go read some bday cards and you will know what I mean, first pretend you will not have another birthday.

Just an update and who wrote this song???

2011-01-08T23:50:00.003-06:00

Amazing how little things make me happy and excited. My oldest son tells me of how he did on his video game and at his Nerf War he plays with some friends. I love seeing him happy! Got excited over my sons Webkinz prizes he got. Was in happiness watching my son do gymnastics. I have to hold onto these things.

I have a PET scan in a couple of weeks. I wonder what it will show? The drs don't care what it shows. To them, no matter what, they think I should have horrible surgery. My cancer blood marker test has continued to go down and has been normal since the second round of chemo. The tumor was 4cm by 4cm when I was dx and then just over a month ago they said it was a scab. But to them it makes no difference. So it is hard to be excited since the drs don't care. I just don't want horrible surgery. I wish I could know that surgery would make me better and not just be a chance. I hate just a "chance" I want a "for sure" for such a major life changing surgery that has a high complication rate.

Heard a song called (I think) Live Like You Were Dying, I wonder who wrote it? I don't think someone who was dying wrote it. It says

"I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do

and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named FuManchu

..........and he said someday I hope you get the chance
to live like you were dying."

Really??? I guess that guy wasn't sick and didn't do chemo or radiation or have surgery because if you did you wouldn't be able to do that stuff LOL! I was so sick and still can't do that stuff! For me, before dx you think what you would do if it happened to you and then it happens and you can't be how you thought you would be or do the things you thought you would do. LIFE, every day reality gets in the way. It doesn't care about your bucket list, chemo doesn't care, your body can't overcome it all. I tried to do those things and it bit me in the butt. I said lets go do things with the kids, who cares we can't afford it, it's now or never, but it comes back to bite you. Everyday, life keeps going on, you can't go and climb that mountain you wanted, you can't drop it all and do the things you want or do the things you want with the ones you love. Life still is going and you can't really break away from it and live like you are dying and there is no tomorrow. There is consequences for doing that.
And really, I don't want anyone to get the chance live like they are dying. I just want them to be happy and live real life and not some hurry up I am about to die life.

Before and After

2010-12-28T22:53:00.002-06:00

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

2010-12-28T00:57:00.003-06:00

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.

Got Milk?

2010-12-18T17:13:00.002-06:00

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!

This is a pain in the *ss!

2010-12-09T12:38:00.002-06:00

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.

No more Radiation!

2010-12-07T17:48:00.003-06:00

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.

Cancer is so so cruel

2010-12-04T10:15:00.002-06:00

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!!!!!

Off ball and chain for now

2010-11-22T22:51:00.002-06:00

I have gotten worse, even from this morning when I was at the chemo dr. They took me off the ball and chain (aka 24/7 chemo pump) until Monday when they will test me again to see how I am doing and if I am feeling better. My feet have gotten so much worse. I can barely walk as of tonight. It is like I am walking on rocks. My feet are numb and sting and hurt all at the same time. My stomach has also been hurting nonstop. Hopefully with stopping the chemo I will start to feel some relief soon.

You look good, you sound good

2010-11-17T15:05:00.005-06:00

I remember saying that to others. I wonder how they felt when I said that. I know I for some reason don't like it so much. I look good? I have never had so many comments about how good I look until I got cancer. I don't think anyone told me I looked good before I got dx. Maybe I didn't look goo then. So I am supposed to be happy that I look good and feel happy when people say it to me but I do not feel that way at all. I even went to the cancer "Look Good, Feel Better" program they have. It is all about looking good with makeup, wigs and then you will feel better. You get free makeup. It sounded like a good idea and for that time I felt normal girls night out doing something normal and meeting other woman who understood. But in general it doesn't matter if I look good, it doesn't make me feel good. And so I guess that is the sting when I hear (again and again) you look so good. I know the other meaning of this phrase is also really "How can you look so normal and have cancer?" I know that is what I think all the time. I am so normal looking and yet I have this cancer.

Another thing that has annoyed me is "at least you haven't lost your hair". Yes, I have lost my hair. Yep, not completely bald so maybe I shouldn't complain, but you know that won't stop me! :-)

I am fried

2010-11-17T14:52:00.002-06:00

I have started radiation, hopefully I won't get too fried. I am doing all the precautionary stuff I have learned from the colonclub message boards in hopes it won't get too bad. It took me about 7 times not to cry during the treatment. It sucks doing radiation more than the chemo for me. Sitting in the chemo chair seemed normal to sit. But to lay how you have to lay to get pelvic radiation is uncomfortable and embarrassing. It is every day, like a job you do not want to go, except you get paid in awful side effects. If I stay on track I will be done on Dec 10. Except the frying doesn't stop, you still keep getting fried for weeks afterward.

My blood counts this week was low so they reduced my chemo dose and I will go back Thursday to get it rechecked.

During the radiation I still get chemo in the form of a pump "fanny pack" that I wear 24/7 never taking it off just refill it and get a new needle and tubing every Monday. The "purse" it came with was awful and ugly. It had a plastic strap that was thin and would dig into my shoulder. So I found my own purse to put my chemo pump in and it is much better in terms of looks and comfort.

I will not tell all

2010-11-17T14:08:00.002-06:00

As I have already said this blog will not be helpful. And even though it may seem as if I am telling everything I am going through and every feeling I feel, it is not. It is too much and too much of things some people don't want to know how it really is. I know before this I had NO CLUE what it meant to have cancer AND have cancer treatment. Sort of like before you had kids you thought you knew what it meant to have a baby but it wasn't until YOU had a baby that you really could grasp it. So unlike having a baby I wish no one have the reality of knowing about this for themself so hopefully you won't ever have to grasp and understand it.

I even feel as if I shouldn't tell my best friend all of this, it is just too bad what I feel emotiontally and physically. I don't want to bring her more down. Life is hard enough.

www.ColonClub.com is the reality of this cancer and helpful place to go or if you happen upon my blog and have cancer go there for help and answers. That website has been my place that I feel understood and not alone. Sadly, I am not alone in this. It is shocking the young people there. The moms with children. It breaks my heart to know so many others are going through this awfulness.

Star Trek

2010-10-22T01:08:00.002-05:00

I am on a movie theme kick for my blog title posts!

Having finished the horrible FolFox chemo and now to start even more chemo soon. And I am feeling better since I am on a "break" from treatment. Hopefully the cancer is on a break too and not multiplying during this time! I have thought about how horrible the chemo is. Even my friend who is a dr calls the chemo poison. It really is poison to your body. Anyway, it made me think of the movie Star Trek the Journey Home one where they go back to Earth and save these whales to save the world (or something like that). Well, in one scene they are in a hospital and Star Trek Dr. McCoy sees a patient getting treatment for some illness and just thinks it is crazy what the drs are going to do to the patient and says something like "Is this the dark ages. What are they thinking that would be helpful??" and basically thinks the way they practice medicine is crazy and barbaric. To which I think one day people will look back and say "People were so desperate to get rid of cancer that they took poison." Just think about how we used to treat many things in the past and we would say that is crazy, how did people think that was a good idea. I feel in my heart, mind, and body chemo is poison and it is crazy for me to do it (and even more so for radiation that I will be having!) but I am desperate and no choice as the drs say "Take this or die." whenever I object to the poisons they want to give me. It sucks knowing you are doing something stupid and it will hurt you and may even kill you. It is weird to say radiation and poison is bad for healthy people but great for sick people. Doesn't that sound SO MESSED UP!

Titanic

2010-10-18T07:54:00.005-05:00

So I tried not posting as you see for quite a while. Thought maybe that would help change things. But it didn't. The thoughts still come and I even feel worse since they stay in me instead of with writing I feel like they get out of me.

Someone asked me something along the lines of is this all I talk about, when have I talked about something else. Well, that made me upset. It instantly made me think of the movie Titanic. Remember the scene when the ship hits the iceberg and they start to get the life jackets out and try to get people on life boats and many people are talking and walking around thinking nothing bad is happening and they plan to go back to their room (be sure to have the bed turned down, and heat on and my tea and biscuits ready they even tell a maid). They don't put on the life jackets they go about things like the ship is NOT sinking. They are even playing music and drinking and going about things normally. I feel like that is the people around me and I am Rose running around and I realize the dire situation that the ship is sinking. Of course that is what I am thinking about and talking about, I am in a horrible situation and know it and feel it and it is consuming me as it should at this time. I have to fight this, I don't want to sink, I want to live and I have to think about and deal with it and not pretend it is not happening and that life will go on as normal. It will never be what it was and that sucks. So it is hard to be with people when I know the ship is sinking and I am trying to fight for my life and go about being "normal" or around people who want me to pretend the ship is not sinking and nothing has changed, just go back to normal and stop thinking and talking so much about my sinking ship.

So remember the warning on the top of my blog, this won't be pretty and turn back now if you can't handle my sinking ship since I will be like Rose running around trying to survive.

Another song I needed

2010-09-14T23:02:00.002-05:00

This is my prayer now I have to do this

What Faith Can Do by Kutless

Everybody falls sometimes
Gotta find the strength to rise
From the ashes and make a new beginning
Anyone can feel the ache
You think it’s more than you can take
But you're stronger, stronger than you know
Don’t you give up now
The sun will soon be shining
You gotta face the clouds
To find the silver lining

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

It doesn’t matter what you’ve heard
Impossible is not a word
It’s just a reason for someone not to try
Everybody’s scared to death
When they decide to take that step
Out on the water
It’ll be alright
Life is so much more
Than what your eyes are seeing
You will find your way
If you keep believing

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do

Overcome the odds
You don't have a chance
(That’s what faith can do)
When the world says you can’t
It’ll tell you that you can!

I’ve seen dreams that move the mountains
Hope that doesn’t ever end
Even when the sky is falling
And I’ve seen miracles just happen
Silent prayers get answered
Broken hearts become brand new
That’s what faith can do
That's what faith can do!
Even if you fall sometimes
You will have the strength to rise

you can see it here http://www.youtube.com/watch?v=hGStix70S1k&feature=related

This was also given to me by the same lady----thanks to her---I needed this.

Who knew Hannah Montana was so wise

2010-09-14T22:22:00.004-05:00

Another lady with cancer told me to listen to this song:

The Climb

I can almost see it
That dream I'm dreamin
But there's a voice inside my head that says I'll never make it
Every step I'm taking
Every move I make feels
Lost with no direction
My faith is shakin
But I gotta keep tryin
Gotta keep my head held high

There's always gonna be another mountain
I'm always gonna wanta make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin on the other side
It's the climb

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down but
No I'm not breaking
I may not know it but these are the moments that
I'm gonna remember most yeah
I just gotta keep going
And I gotta be strong
Just keep pushing on 'cause

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
But sometimes I gonna have to lose
Ain't about how fast I get there
Ain't about what's waitin on the other side
It's the climb

Keep on moving
Keep climbing
Keep the faith

It's all about the climb
Keep your faith
Keep your faith

**********************
You can see it here-- http://www.youtube.com/watch?v=rkwU92ak07Q&feature=related

I just have to keep playing this over and over in my head.
I want to do this. I listen to this song in the van on the way home from gymnastics with Lil Hercules, hopefully he didn't see me cryin. It was dark.

Trooper Bday, Chemo diet, and I know why this blog is such a downer

2010-09-11T12:39:00.005-05:00

I know why this blog is such a downer. I only write when I am down. When I am "ok" I don't post, I am doing things, living life.

But here is some good news. And I mean it. I went to get out jeans since now I get cold easy and then I start to hurt. It was so great fitting into all these jeans that I hadn't worn in forever ( I save all these don't fit clothes before this--you know one day you will fit them) well now I fit them. I love it, it was so fun and made me happy to fit so nicely into them. I love getting dressed now. So for me that is the good thing about chemo, a great and super easy diet. I hated diets before this, it was hard to loose weight. Now it comes off easy.

Today we are celebrating Troopers birthday even though it was Wednesday. He is 1 yr old! And the good thing we made it to 1 yr of nothing but breastmilk! I am so thankful for ALL the milk mamas who helped make that possible, no matter how much or little you gave, we use every drop and grateful no matter the amount you gave. I haven't been out to the deep freeze to see how much is left, scared to but hopefully since it is full we can make it another few months of breastmilk for him. We of course got him a Star Wars birthday cake. On the cake we told the lady to put happy birthday Trooper. We didn't say that wasn't his real name. She gave a look like you named you kid Trooper. :-)

I know I am not helpful and the odds

2010-09-10T13:05:00.004-05:00

I know this blog is not helpful to the person who finds this and has cancer, sorry I just can't be that way right now, maybe never it feels like. I have come across several blogs that are helpful and I thank them for that, they are way better at this than me. I think it is because I just can't handle anymore at times, I can't be helpful since I am so far in need of help. So remember that is why I put the warning on my the top of my blog to turn back now since this won't help anyone.

I haven't talk to my dad before this for years and recently I had started talking to him on skype (you must try this, very neat and free!). Anyway I haven't talked to him in over a week now and nothing happened between us like it usually would have, it is just that I can't see him with me like this. I think it would be hard for him to see me like this than me not talking with anymore.

This cancer is like a puzzle. When I was first dx I got one piece of the puzzle and every day since then I am getting more and more pieces of the puzzle and I hate the way the picture is looking.

The odds--I should play the lottery--that I person my age would get this type of cancer-- .05 %
Is that shocking or what? Don't forget the point-- way less than 1% chance!

5 Year Survival Rates for my specific cancer type and Stage 3B (T4,N1)---35%-42%

Chance of recurrence 50%

Chance that it will recur within the first year after surgery 5-30%

no cute title for this post

2010-08-31T00:11:00.002-05:00

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.

We already talked about that

2010-08-23T09:20:00.002-05:00

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.

I am just doing this

2010-08-17T22:13:00.003-05:00

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

2010-08-17T05:52:00.003-05:00

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.

Great news! I am NOT losing my hair!

2010-08-14T16:49:00.003-05:00

This ain't no pink cancer

2010-08-13T05:45:00.002-05:00

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.

Chemo Round 4

2010-08-10T07:54:00.003-05:00

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.

Hair today, gone tomorrow

2010-08-03T08:47:00.002-05:00

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.

What was I thinking??

2010-08-01T22:52:00.002-05:00

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.

Chemo Round 3-cancer wouldn't be bad if you didn't have to do chemo

2010-07-28T05:55:00.003-05:00

Yep, it is still kicking me around hard. You know how when you get a rx from the dr and the insert lists all these horrible side effects but thankfully most people do not get any of them or maybe one or two little ones??? Well, on this FolFox chemo when I look at the list of possible side effects on the insert, I can check off everyone! Cancer would not be so bad if you didn't have to do chemo! My friend who had cancer gave me these great buttons--cancer sucks, chemo sucks, piss on cancer (you know the one with the boy pulling down his pants and peeing on something). She also gave me a livestrong bracelet. I never really understood the saying on that bracelet till now. You really have to try and livestrong to get through this. I don't know how strong I am. I really feel like a wimp. How do old people with cancer do this? Even worse, how do children with cancer do this?

So the side effects are horrible breaking me down. Of course all the drs can do is just throw more drugs at it. I did some, it didn't really help. So I figure now why give my body more drugs and will not take all these extra drugs that don't really help. I think for me it will just be sleep, sleep, sleep and not eating on those days following chemo that helps me the most. I know not eating sounds bad but it is my body telling me not to, it can't handle doing anymore than it already is to get out the poison and breakdown the chemo that trying to breakdown food is just too much. Chemo is a diet for sure. Even after the worst days I still don't eat like I would. My head says eat on the "good" days. And I will want something certain to eat but then when I eat it, it just doesn't taste that good or I can't eat much of it. So far chemo is only good for loosing weight. Heck, will it even kill the cancer? Not all of it, that is why horrible surgery. And the cancer will probably come back and will still be hiding in my body somewhere.

So on my "good" (as good as it can get) days I have this strong need to nest and get everything ready for the bad days. It is weird, I feel like I am 9 mths pregnant with nesting syndrome! And I also feel this need to do great and new things with the kids on those days. We went to Chicago and now we are going to go to an amusement and waterpark. I guess it is because what if I get sicker and have no good days and can't do nothing. I have to convince Jedi to do this since we don't have lots extra for this but I can't help it. I feel like everything is now or never.

Bonding with my baby

2010-07-16T10:37:00.004-05:00

With bottlefeeding I can see how easy it is to get disconnected from your baby. You can let others feed them, they feed themself as they get older or you can buy these products that let you prop the bottle for babies who can't hold their own bottle. I feel those products can be dangerous and have no place except maybe in rare situations--mom all alone with triplets. I WANT to feed Trooper ALL his feedings except for those few times when I am too sick. Princess keeps asking to help feed him but I keep saying no, I am supposed to hold and feed him just like when I nursed him. I also like to warm up his breastmilk. I figure there must be some good reason God designed our milk to be warm and not cold. I am also thankful that we co sleep and is something that cancer hasn't changed. The other night I couldn't fall alseep since all I wanted to do was look at him. He was cuddled up in my arm close to me. It was so peaceful and pure happiness.

Chemo Round 2

2010-07-14T14:36:00.002-05:00

This will be long since I haven't been able to blog for a while.

It was round 2 of chemo. I feel like I am in a boxing match. Of course, I am getting beat up very badly, chemo is winning. It totally knocks me out for a at least 5 days and it took 7 days to feel back to normal. It is like night and day between the way I feel. I can't help but feel like chemo is making me sick and not making me better. Someone (who has cancer) told me her first reaction was not to do chemo and had to be talked into it. Now I know why. I feel like they are bringing me to the edge of death to kill the cancer. They say by chemo round 3 or 4 most people will not "recover" and still feel bad the whole time. I hope I can at least stay on this feel horrible for one week and then feel normal for a week until the next round. I then could run around and do all the things I need to do and prepare for the bad week.

The kids, the 4 oldest, are off to cancer camp for a week. It stinks that it is during my good week. I wonder how it will effect them being around other kids with parents who have cancer. I still don't think they "get it". I know there is at least one child there with a mom who is terminal and other gets who definetly get what going on. What will they say to my kids? Will this change my kids? I want them to understand in one way but in another I don't want them to have to know about horrible things.

Ok, it is time for my long, loud scream since I can't type what I want to say.
SCREAM SCREAM SCREAM SCREAM SCREAM SCREAM SCREAM SCREAM!!!!!!!!!!!!
I am sure there will be more of those.

Trooper is offically on solids now.(He is 10mths now.) In the last few days he is totally into them now. This is good even though my amazing friend found a super pumping mom who is giving Trooper more than enough milk. This way no matter what happens I have a cushion, he can eat food. I am still not dried up, though I am not engorged or leaking, I can still squeeze a drop out. I wonder when I won't be able to do that?

I cut my hair- it was a disaster. It was a horrible haircut. I can't type/talk about it or I will get mad again. It only looks half way normal when my hair is wet. At least I got the money back for it. Don't go to Great (slash, make that Bad) Clips in Moline.

Back to Reality

2010-07-04T23:11:00.003-05:00

Went to Chicago this weekend. Walked the museums and zoo. Felt so normal, well, except for the bottle feeding part, that was a huge pain. Though, I was normal bottle feeding since that is all I saw and I fit in instead of being the only breastfeeding mom I would see. I walked around thinking I feel so healthy (it was a good day, no chemo effects). How can *I* have stage 3 cancer? Do I look like I have stage 3 cancer? Tuesday is coming and it will shock me back to reality, yep, I have stage 3 cancer and I get chemo and all the horrible effects that bring. I am so dreading it. It will be hard to walk in there now knowing how awful it will make me feel.

I saw part of the movie Stepmom (movie about a mom having cancer and leaving her kids to the new stepmom). I had seen it before but seeing it this time was way different. Too real.

Crying and crying

2010-07-01T21:17:00.004-05:00

Trooper cries everytime he finishes a bottle. It is not because he is hungry. It is because he still wants to suck. He leaves the bottle in his mouth and cries. I have now switched back to slow flow nipples to try and make it take longer to get the milk so he can have more comfort sucking. I have tried and tried the pacifier (2 types), my thumb, my finger, his finger and thumbs and still he will not take it. He wants to comfort nurse so bad. I know this. I can feel this from him. It breaks my heart.

I have tried to sleep with him for several nights but it still hasn't worked out. He cries and cries despite me trying to comfort him. Jedi has to hold him sleeping in the recliner still. I want to cuddle with him so much.

His new cry is old to me now since he does it so often.

He is taking about 40 oz of breastmilk in 24 hrs!!! He still will only eat one jar of baby food.
Thanks to Jennifer for bringing yummy homemade baby food for Trooper.

I HATE bottle feeding!

2010-06-30T11:54:00.003-05:00

I HATE BOTTLE FEEDING!!! I HATE BOTTLE FEEDING!!!

I bottle fed in public for the first time. It felt weird, like I needed a blanket to cover myself, ha ha. No, I need a shirt that says "I'd rather be breastfeeding."

I have yet again learned so much (just like I did when I was pumping to save him milk). Pumps are not good. All I kept thinking was "This is the best we have come up with for moms?" . Now I have learned that bottle feeding is very different from nursing. Yes, I know I always said that but now it is played out in front of me at every feeding and I can see how EVERYTHING about bottle feeding is different than nursing. My baby has changed. He is now showing all the signs of a bottle fed baby. It is breaking my heart. I have now slept with him for 2 nights since weaning. He does sleep different in relation to me just like sleep doc James McKenna says they do. He was higher up in the bed and not snuggled in the nursing position close to me under my arm. He has now stopped doing the only taking a 1/2 oz and then pushing the bottle out to take a break and then taking it back in a few minutes later to take more. Sort of reminded me of how nursing is. Now he sucks the whole 4 oz down at once. It makes me sad since it is so different from nursing. I feel disconnected from him. I am doing all the feeds because that is how it was and is supposed to be. I miss nursing him so bad. I pray that when I am done with all this I can get him back to nursing. He will only be 15mths if everything goes as planned. I hate cancer, I hate cancer, I hate cancer. Why can't I just have cancer and still nurse at least but oh no cancer has to destory all of your life in every way. It is so sad to see him change to a different baby, he is different from who he was going to be.

Yuck

2010-06-26T21:37:00.002-05:00

Thursday was the worst. I was tired like I have not been tired before and throwing up, stomach hurting on top of the other symptoms I already had. The last couple of days have been a blur. This is supposed to be the easy time. It is only supposed to get worse they say. I have recovered by Saturday like they said I would with the first chemo round. The next time it will take more days to recover and then more days to recover until I don't recover until I stop this chemo. This is horrible. How will I do this??? I am a wimp for sure. I can barely make it through pregnancy and labor. How can I cope and do this??? I feel like the worst thing about cancer (next to effecting everyone around me) is that it kills you while you are living. It kills your life. You have no life, cancer consumes it all. And it makes me feel so horrible beyond what I have ever known.

Trooper has adjusted to taking the bottle. He has changed since weaning. He acts like he is disconnected from me and the world. He just lays his head down on me and anyone who holds him. He doesn't play on the floor anymore. He just wants to be held. Which I like to do, but he is not himself, he doesn't smile as much or act like he used to. He is different, his spark is gone. It is true what I wrote before about giving every smile I have to my kids. I don't have a lot of them to give and I give them all to him trying to make him be the baby he used to be. I am still so glad I didn't wean him earlier. I miss nursing him so much. When I lay down I miss nursing him at night. We don't even sleep together anymore. Jedi holds him all night in the recliner.

I hate bottle feeding. I don't understand how people say it is easier! It is so hard and complicated and takes forever! How much to make and how much does he want this time, cleaning bottles, and putting them back together, how to transport them and make sure it is at the right temp and doesn't go bad. It is a PAIN. I would love to give a demo of what I do when I feed him now verses what I used to do---just left my shirt and feed him. I feel disconnected from him when I feed him. This is definitely different than nursing him. Though, I do want to say a BIG thank you to my friend Molly who has done everything she can to make bottle feeding easier. I would have been overwhelmed for sure without her thinking for me during this horrible time.

I am not looking forward to July 6, that is my 2nd round of chemo.

Nicknames explained

2010-06-23T07:03:00.002-05:00

Jedi--my husband--he LOVES Star Wars
Yugi--my 15 yr old son--loves card/computer games
Mr. Clean--my 10 yr old son--loves to clean
Lil Hercules--my 8 yr old son--super strong and talented gymnast
Pumpkin--my 6 yr old son--so cute and best smile ever
Princess--my will turn 4 yrs old on Saturday girl--so of course she is our princess being our only daughter
Trooper--my 9 mth old boy--now my husband might say Trooper is from Star Wars like stormtrooper but it is really because it took 2 wks for him to learn how to latch on and suck. I would say he is being such a trooper since he would keep trying and trying and not give up---he was such a trooper through it.

If I had a nickname for me I would pick Annie. I love that movie, one of my faves. I even had her dress when I was a kid. Sears had a whole line of clothes from the movie and my mom bought me several outfits.

We have 2 dogs--Jango a walker coohound named for a Star Wars character and Reba a bassett hound named for Reba McEntire the country singer

Nite report

2010-06-23T06:28:00.002-05:00

Trooper stayed asleep until Princess had an in the middle of the night crying. She does this if she has to go potty or dream that wakes her. Jedi then fed Trooper 2 oz and Trooper drank it all down correctly, but would not let Jedi even hold the bottle. Remember, he had been mostly chewing on the bottle or letting it drip everywhere. He then went back to sleep until 5am when Jedi got up for work. He then cried on me until he finally gave up after an hour of his new cry. I hate this cry. I am trying not to cry during but it is so hard, So I figure a quiet cry is ok and at least better than the full blown ugly cry for him to see.

Sorry if this offends you, wait, not really, I am sticking up for the babies and toddlers. But I really have no sympathy for those who leave a baby to cry it out and/or wean them without a dire reason ie cancer. So this why I can't go to LLL mtgs anymore. I used to be against cry it out and early weaning but could still understand where the mom/dad was coming from on why they wanted to do it--go back to, need more sleep, don't like a moving baby in bed with them or a baby that is nursing all night. I remember understanding and having those feelings. But now I say suck it up parents. You are the adult you can handle it--hey, if people can deal with cancer you can deal with this small in comparison annoyance. They are babies!

So after doing this to my baby, I can't understand people who do this on purpose. So there is no way for me to be a Leader at the LLL mtg and be all nice and understanding about it. Maybe I can come and just be a mom, they can say anything, though the Leaders would hate me for it.

For now I sit in the rocking chair with him as he cries. I wish I could put him the sling but it hurts my port.

I hate cancer, now I hate it even more. Cancer has been so horrible to me and will continue to do worse to me and will probably be what kills me. But does it have to hurt my kids, husband, family, and friends to? Yep, it does, no wonder there is all these cancer websites and posts saying fu cancer.

Trooper, Shocking!, Ball and Chain

2010-06-22T21:55:00.004-05:00

Trooper took another oz from Jedi! He then fell alseep. But of course it is only 10pm. But hey it is a good start! So glad I gave him the water bottles before this since he then knew what a bottle was. And still very glad that I nursed like normal all the way up till the chemo started. I know it may get boring to read about every thing Trooper does but it will help me see the positives and see yes he is making progress when he has bad moments with it. It was so hard holding him with this new cry that I hadn't heard before. It made be cry. I have a new saying, sort of like when I am in heavy labor I chant "I can do it, this is easy, I can do this." I say that over and over again. Right now when I held him I kept repeating "I know what you want. I love you. I am protecting you." That helps to think that I am protecting him. Like a mom that yanks her child by the arm out of harms way of a speeding car even if it would hurt the child and make them be in shock and not understand why you did it, you were protecting them.

Another side effect of the chemo: Shocking!! Yes, really being shocked! Like electricity! I didn't really believe it when they told me it. Ok so no ice and no really cold drinks but heck even a slightly cold drink gives you a long shock when you swallow it. Not even a short shock. The water/drink has to be very warm like when you leave your drink in your car on a hot day. I was so thirsty, very warm water doesn't quench your thirst, but I guess it is better than having a lllooonnnggg shock when you swallow. This is supposed to apply to touching cold things ie the freezer and fridge, must use gloves or oven mits. I haven't tested touching anything cold because after the cold drink was enough to make me a believer. This will be it harder for me to swallows pills now since I usually open a pudding or applesauce cup to help take the pills and then put the leftover in the fridge to use for the next pill. But now I or someone else has eat the whole thing or toss it out. The kids don't like eating cold pudding or applesauce.

It hasn't even been long since having the chemo pump on but already it I am calling it my ball and chain. It is such a pain changing clothes and taking everywhere. It is like dragging a ball and chain around. So I will now even take longer to answer the phone and most liking miss your call and will have to call you back.

Off to bed for me. Hope Jedi and Trooper can sleep. I do wonder how many times he will wake up and how much he will eat during the night.

Chemo round 1

2010-06-22T20:22:00.002-05:00

All the kids, including Trooper, did great with Natalie (Trooper thanks you especially!) and Allison and Constantine. THANK YOU!

When we came to pick him up we forgot his bottle and pacifier. (We had already lost 1 other bottle in our house somewhere!) We were on our way to Gilda's Club for a parent mtg about the cancer camp the kids are going to in July. So he was fussy there and I couldn't hold him since he just kept wanting to nurse.

At home, Jedi took him out of the car seat, he was crying, and he fed him, he took 1 oz. I tried to hold and rock him but he just cried for 30 min. The cry was different from all his other cries. I never say no to nursing him before this. I tried playing a pacifier game where I put it in my mouth and then he would take out of my mouth and he would put it in his mouth. This didn't last too long and he never sucked on it, just chewed. Jedi took him back. So far right now he is "better" with Jedi. Jedi is not looking forward to tonight--- being up and feeding him and trying to get him to sleep and stay asleep. He really has not ever had to do any of this before.

I have started my first side effects of the chemo. My forearms feel squeezed and tingle. My sight is weird. I feel a little drunk when I move my head and have had tunnel vision a view times. They say it will get worse until Saturday and then get a better until next time and then every time after that it will take longer to recover until you don't recover until the chemo is over.

Good night! Good night? I hope so.

170

2010-06-22T09:58:00.002-05:00

170 oz of breastmilk, that is what I got.

Jedi is being a jerk today.

My sleep has been horrible since I found out. I can fall asleep (and thankfully I still haven't had one cancer dream, I will hate when it invades my last peace) but I wake up in the middle of the night and can't go back to sleep. I am so tired.

The start of worse is here and the weather matches it--gloomy, rain, and thunderstorms.

Hard day

2010-06-21T21:30:00.002-05:00

Today was more break downs than usual. I have learned from reading other cancer blogs that it doesn't get all better. It is always a roller coaster of up and down. It is so weird to read so many different ones and can relate to each one of them. What will tomorrow bring? It will be ok to leave my children with my dear friends but it will be hard to pick up Trooper and look at him and have him look back at me because he will want to nurse. He always holds out for me. How long will he go before he gives into the bottle and take more than a few sips?

Jedi will not be putting Trooper to sleep or sleeping with him tonight. It will be my last night nursing and probably sleeping with him to for awhile. I am trying to soak it up, every nursing and look of love and perfect peace he gives me since it will be awhile before he gives them to me again.

Thank you, the comments left do help.

I don't know how I will do this

2010-06-21T10:47:00.002-05:00

This is horrible. I am am having a freak out. How can I do this. I am horrible managing things right now and then I have to add chemo, radiation, more chemo then horrible life changing surgery too. I break out crying and going back to pretend this is someone else I am thinking about. Reading other people dealing with this is helpful and horrible at the same time. Torrow is going to be so horrible, it is hitting me now that is so soon. It will just be worse than it is now and I can't take much more it seems. As any mom knows it is hard to parent at times even when you are at your best mentally and physically and now I will not have that. Jedi has to work (chemo doesn't even stop him--yes we need him to work to pay the bills) but I just need him to really be here and care and understand, I don't even think he still gets what is happening, he still thinks this is no big deal, just some medicine like tylenol. I don't want to hear you will get through this. Yes, ok, I will get through this but it will drive me over the cliff hanging by one finger. Tell me how you manage your children and life while hanging on by a finger. I am crying in front of Princess and Trooper. He's too young to understand and Princess doesn't say anything because she is used to seeing me cry now.

Maybe I won't be sick after chemo but I know my mind will be and I don't know how I will function with Trooper.

Breastfeeding and Weaning how it is supposed to be

2010-06-20T08:28:00.003-05:00

I sat the kids down and told them about how I have to stop nursing Trooper. I wanted them to know that this is NOT how it is supposed to be. This is not normal or good. I don't want Princess (my almost 4 yr girl ) to think this is what she should do. What impression have I left her with?? Let a baby cry and wean them when they are so young and that all this "stuff" I have around is normal. Their last memories will not be of me nursing a toddler, but of this horrible situation.

I treasure every nursing I have with him. I will miss most the way he can look up at me and smile at me while still at the breast. He is attached to me, a person, now he will be attached to a bottle, a thing. I hope he will let me hold him and feed him with the bottle.

A storm is coming

2010-06-20T08:22:00.002-05:00

I feel just like a picture my friend took of the storm we had the other day. It was a picture of dark, horrible, huge, frightening rolling clouds coming in over her neighborhood. That is what I see is coming for me and my family. The dx was just the small rain shower and Tuesday will be the beginning of the real storm. That is the day I start chemo and will wean Trooper. I wonder how the chemo will effect me. I know how weaning will effect Trooper and me and Jedi (dear husband), who I hope will help me with the weaning.

I feel like I can not protect my family from this storm, there is no where to hide, no basement to run to. I have to stand and face it full force.

Totally Opposite

2010-06-18T11:20:00.002-05:00

On my kitchen counter is many bottles, several pacifiers, hosptial grade pump, pump parts, and a freezer of breastmilk. How do I *decrease* my supply to *nothing* very fast? I have even thought, can I get a baby *to take* a nipple shield that I close off the holes in.

All opposite of what is normal for me. I never have any bottles, pacifiers, pump stuff, or more than a few oz of milk in the fridge and I am always asked by moms how to wean from a nipple shield and how to increase their milk supply. It is like being in the Twilight Zone.

Closing Happily Held

2010-06-18T11:17:00.002-05:00

I will be closing Happily Held and not doing babywearing classes or selling carriers anymore. Even right now I can't wear my sling or mei tai since it lays across my port sight and hurts.

So how do I let Maya Wrap know? Call them? Email them? What if they ask me why? I still have a very hard time telling people I have cancer.

I hope Trooper will be happily held since I can't nurse him.

Scarlet Letter C

2010-06-16T21:08:00.003-05:00

I am now officially branded for cancer-- I had my port surgery. Sort of reminds me of the Scarlet Letter "A". It will give me all the chemo meds. I start Tuesday afternoon. It will be my last day of nursing. I went to count my milk that has filled a huge portion of my freezer and it looks like so much but it is no where close to what I need for Trooper to even get to 1 yr old. So I pumped more and then split an oz of milk! Then I pumped as he cried for me. This is breaking me down. I still can't imagine not nursing him. My chest and arm is sore I can't even have him nurse on the port side since it hurts.

fight bad with more bad

2010-06-13T20:36:00.002-05:00

So cancer is horrible and very bad and so to fight it the only thing we have is more horrible and very bad (chemo and radiation). Why can't we fight bad with something good?

I have to wean so very soon because of bad things. Why can't anything be good?

The perfect note and hope

2010-06-12T18:04:00.005-05:00

I told you about the fight with my mom about all this judgement of everything about me and my life and how I am dealing with this. She left today early in the morning even before I was awake (that had been the plan all along). She left a note for me. I didn't want to read it because she had made me so upset that I didn't need that again. I finally got the mind to read it and it was the perfect thing to say to me. I couldn't believe it came from her, it was so amazing, it was exactly want I needed. God must have gave her the words to write, a small miracle happened. She gave me a Bible quote that was perfect. And just reflected my feelings back to me---saying yes this is hard, your life is hard, and acknowledging all that I have gone through in my life and what is going to happen. That is what I need. Someone to listen and say yep this sucks and no judgement about how I deal with this and anything else, just acceptance and love. This letter was a miracle and I think God helped her write it considering my mom is an agnostic.

After reading that note I called my sister she told me that when she was at work some woman (who she doesn't know) came up to her and touch her arm and said she could see her sadness and that she would pray for her and her sister and all would be ok. How strange is that. My sister was freaked out. It gives me hope.

Little bit of everything

2010-06-11T17:49:00.002-05:00

Had fight with my mom, she just doesn't understand at all!!!

But Natalie does and she is GREAT and AMAZING!!!

Please just let me deal with this how I can deal with this. I know it is most likely not how you would deal with this but this how I deal with it.

2010-06-09T07:57:00.002-05:00

now i know what pushes me over edge and makes me know i cant handle this:
it is when the kids are going crazy and being bad and i think see i cant handle the normal craziness how can i handle anymore without flipping out and going off the side of the cliff

typing one handed because i am pumping

2010-06-06T14:13:00.000-05:00

"Just don't give up I'm workin it out
Please don't give in, I will let you down
It messed me up, need a second to breathe
Just keep coming around
Hey, whataya want from me
Whataya want from me
Whataya want from me

Yeah, it's plain to see (plain to see)
that baby you're beautiful
And there's nothing wrong with you
(nothing wrong with you)
It's me, I'm a freak (yeah)
but thanks for lovin' me
Cause you're doing it perfectly
(it perfectly)

There might have been a time
When I would let you slip away
I wouldn't even try
But I think you could save my life"

2010-06-03T21:40:00.004-05:00

Went to Gilda's Club. It was not for me. I am not like those people. The kids had fun, heck I think hubby had fun. He is so up and positive it makes me mad.

Went to my son's practice today. That was good and helpful. Talked with another team mom who had cancer. She understood me. I told her I was in the anger stage and I didn't see me getting past that. She said she stayed in the anger stage the whole time. It made me feel normal. The other team moms are being so great about taking my son in so he continue to do gymnastics. It would break me if he couldn't do it.

Play, rewind, play, rewind

2010-06-01T21:18:00.003-05:00

That is why I haven't posted. It is mostly the same yucky stuff going through my head. I can't sleep. I think, think, think, then say stop, stop, stop, then say sleep, sleep, sleep, but no sleep, it just comes back to think, think, think. During the day it is ever present. I feel like I am being followed by someone who is holding a gun to my head. It is always there. I can try to ignore it but then it always hits me like an ocean wave that knocks you down. I try to stay present and not think of the future but that is so hard to do. Even the present sucks. To much everyday life and then all of this to deal with. My mind is going to explode.

Port is coming soon and then that means chemo (on a pump) and radiation (5 days a wk!) and then that means no more nursing Super Trooper. I can't wrap my head around that and actually not nurse him. I will freak out. He will freak out. I don't have much milk saved up. We are trying to get him up to 3 jars of baby food a day and add yogurt. I hope he will understand that I love him even though I am being so mean. Pray he will understand.

No Happy Bday for me

2010-05-28T11:43:00.003-05:00

I was so sick after the second round of tests. Vomiting black and feeling sick, and weak and having the the chills. Admitted to the hospital for more tests. Isn't this fun and I haven't even gotten started down the road with treating cancer. Got released 24 hrs later and my husband dropped me at home to go and pick up the kids. I feel asleep then woke up 5 hrs later to see that they were still not home. Yep he was having fun not dealing with me. I didn't get my baby when I could have had him. He took those 6 hours away from me where I could have nursed and held my baby that I will not get back. Time is going so fast. I still feel so weak and dizzy especially if I stand up.

Oh forgot to tell you that it is stage 3 cancer, isn't that good news at least it is not stage 4. Yeah right I have good news it's only stage 3 cancer.

My kids have messed up the yard by playing with tools building things and one is running the neighborhood. The others have eaten whatever they can. I can't do this I don't care. It will only get worse from here.

You depressed? Of course I am what do you expect. I am too weak to fight.

How? Why? and grumpy

2010-05-26T12:13:00.003-05:00

We told the kids and I didn't cry in front of them. They asked how did I get this and why I got this. I don't know. At least they didn't ask if I was going to die or I would have cried.

I am so grumpy and feeling so sick. Yeah, now I go to the dr and now I feel sick . I didn't feel sick before. All the tests and drinking icky medicine and no eating has made me grumpy, well I am more than grumpy what is the word for that.

I can barely handle the kids normal acting up behavior and now it is making me angry. It was hard enough on days I feel fine and now this. The worse part to know is that I will feel worse, much worse. How do you explain to the kids yeah all the dr visits I am doing is to make me better but I am feeling and looking worse everyday?

Off to more dr appts today. And more next week.

Crying over split breastmilk

2010-05-24T09:54:00.001-05:00

yep i just split 3 oz of milk! that hurt. i need every oz.

Pumping

2010-05-24T08:36:00.002-05:00

I have only pumped 6 times and it sucks. It is hard to fit in while nursing my little guy and him needing me. Who would choose to pump instead of nurse? Not talking about moms who pump because baby who won't latch or working moms but talking about the new thing LCs have been seeing that moms want to pump right from the start and not because of problems. It seems a million times harder and I feel so disconnected to my baby and attached to the pump.

R U going 2 have anymore?

2010-05-23T09:35:00.002-05:00

I would always get that question once people found out I have 4 or 5 or 6 kids. At the time I would say I don't know and then after 6 I would resort to well I probably won't since of my age. I was saying what people wanted to hear. Though it wasn't a definite answer, there was still room for a yes. Since this happened on cue I have gotten the question from someone. And this time I *had* to say NO, no more kids for us. I HATED saying that. It was like yeah you all are right, anymore kids would be too much. I appeared normal now. It is normal to not want more kids. To me having to say no meant no more life for me. I am not able to give life.

Undercover breastpump mission

2010-05-22T23:14:00.004-05:00

We looked like we were on some secret mission (or making a drug deal out of the back of her trunk) when we met the breastpump lady at the Target parking lot. And in the middle of it all a friend (who doesn't know yet) drives up asking what are we doing. My friend who is with me tries to advert her from coming any closer and tries to come up with some answer. She drives on. Our undercover mission isn't blown.

At home I am still on that undercover mission. With a big box and going to my room by myself this is very hard to keep this undercover much longer. I need to pump at least 4 times a day for 20 minutes (that is my goal right now). We are planning on dropping the bomb on Wednesday to the kids. They will think this is weird, why am I pumping so much and with a new pump.

This really sucks!

No rest

2010-05-22T16:42:00.002-05:00

I haven't gotten much sleep. At first I couldn't fall asleep since my brain was on overload and couldn't turn off. Now I can fall asleep since I am running towards it as my only escape from this cancer. A land of before this. But now I am only able to sleep for a few hours and then I wake up and can't go back to that escape. I haven't eaten much. I don't feel hungry at all and food doesn't taste good. It just taste bland.

The book they gave to me talks about getting from the "why me?" stage to the "why not me?" stage. Hell no, I am not going to that stage! I am not going to say I should have gotten this! I can't stand thought of being positive about getting this. What is positive about this?

I could barely handle what I had before I had no room for more how can I handle anymore when now I am surely overflowing and drowning? I don't want to. I am like a toddler in a temper tantrum saying over and over that I don't want to do this. But no matter it will not make it stop.

Have faith they say, you only need a mustard seed size faith. Well, right now mine is so small it can only be seen under a microscope.

Gilda's Club

2010-05-21T15:20:00.002-05:00

Went to Gilda's Club. I am going crazy. I needed to know things. They are just like La Leche League for people with cancer. They were saying all the same things we say, but of course it applies to something horrible like cancer and not something wonderful like breastfeeding. Met two people who have/had cancer. They look so strong. They could answer my questions. Was a very small hope after 5 days of none.

5, bargining, begging

2010-05-20T22:56:00.002-05:00

5 is all I can think about. 5 yrs I can't be gone in 5. 5 is not long enough. That is the only number that I see when I read.

I keep asking for less and less. I am bargining with Him. I am now just begging, begging, begging. I have to be here for way more than 5.

I will take the torture for 5 yrs. I don't want torture for 5 yrs and then not be here.

The drive home from practice was horrible. A hour is such a long time to think. I am going crazy! I am going crazy.

I thought she lived a long time passed the horrible news, how lucky she was. It seemed like a long time then. But now it is not long enough. I don't want to be her. I don't want to be her.

One son asked me if he would be alive in 2020. I first thought I heard him ask if I would be here in 2020. I paused and realized he asked about himself. What would I have said if he asked if I would be here in 2020? Why did he ask me this?

I have talked so calm and rationally today. I hate talking like that. I have to talk like that so I don't scare people. I have to talk like that so I do not scream. When I talk so rationally I feel like I am talking about some other mom and her problem.

(some) Questions I wanted to ask her

2010-05-20T08:38:00.011-05:00

I wanted to ask her but didn't, now I can answer them for myself

How do you want me to act?
Anyway. Be real. I know this answer will change. Sometimes I want you to act one way and sometimes another. Bad part is most times you will not know how I want you to act. Just be you.
I don't know how to act in front of you!

Do you want to talk about it?
Yes! No! and again the sucky thing is you won't know which it is but what is worse is not talking to me and not saying anything.

What do you need?
I was too afraid to ask her, I think I was afraid of the answer. I am afraid of cancer. I ran. Can I say we weren't best friends so it was ok I ran? Do I think it is ok if you run? Yes, it is ok if you run. (even if you are good friends with me) I want to run! I did run. Your life is hard and I know you can not wrap your head around this. I can't wrap my head around it. I couldn't back then either. I will not be mad. I will understand. I think you are crazy for not running. You don't need to be there (physically or mentally) for me all the time. Only has much as you can handle. ( I remember thinking back then how to I give all of myself to her when I can't handle my life already.) Well, you can't, so you only have to give as much as you can or want to give. Don't feel bad if you can't. I had it on the edge before this and could barely give anything above that so I understand. Normal life is hard, this is harder, who would wants harder. And if you can change your mind at anytime. I remember thinking well it's been such awhile since I talked to her, I can't call her now, what will she think. Well, I will be glad you called and not care about any time that has passed.

Things that would just come out of my mouth and sound stupid. "How are you?" I will promise to understand why you say that, it is because that is the social norm. Just like "Is he a good baby?" "Does he sleep through the night?" The opening to start a conversation. But just be prepared for my answer. It won't always be "Ok" or if I ignore it and I don't say anything.

Oh and I found another answer I am going to borrow from here---bitsofmyself.com because it is so funny (maybe only people with cancer thinks it's funny?)
"How's your husband (mom, sister etc)?" "They're fine, they don't have cancer."

Will you cry if I say the wrong thing?
Yes and I will cry if you say the right thing. I will cry A LOT. No matter what you say, even if you say nothing. It is me, I have all these things going through my head all the time that makes me cry and get mad.

I would rather you tell me what you can do or what you want to do. I will feel like I am always asking for something. I already feel that way and it has only been 3 days! Just let me know right up front if you can't do something. I won't be mad, I will be relieved that you told me right away.
It feels very weird to talk so rational about this with you but I have to so I can get things done right. But I would rather be crying and screaming right now.

I need to learn how to fight. If you know how to fight and want to help (even a little) fight this, then Me, hubby, 6 kids, and 2 dogs would be ever so grateful.

HDTV

2010-05-20T08:02:00.003-05:00

Walked outside this morning. Everything looks like HDTV. So crystal clear, so precise, no blurs. The sun seemed brighter. Everything is so different.

My mind is playing ping pong, going back and forth, back and forth between despair and fighting.

I took my baby to the dr with me. I will take him everywhere, I don't care what they say.

Yeah, it sucks for you to get bad news, but it sucks for me more to have to tell you. I have to tell, I have to do something. I have to get ready for a fight. (Pinged back to fighting but it will pong back to despair with no notice at all.) I need people to fight.

I will have so many dr. appts. I am the one who hates drs. It has only been bad experiences with them. I hate having to fight them. But I have to, I have to get the best, I have to do this perfectly.

all i am asking is one thing

2010-05-19T22:42:00.002-05:00

it is quiet here now the roller coaster is going down.

all i am asking is just one thing, one thing. i keep asking for less and less. i just want to live i just want to live i just want to live

i'll do all the crap i just want to live i have to be here i have to be here i have to be here

Just like roller coaster

2010-05-19T21:15:00.004-05:00

This is just like a roller coaster. Though I only think of a roller coaster going down. Thank you, thank you, thank you to my friend for going with me, again. It was nothing new, stuff we already knew. Just starting this, all the things that have to be done.

Banana flavored drink to drink for the CT scan. How will I drink it? I bet it does not taste like bananas. I like bananas. No medicine ever tastes good. Why? Why do all things that are supposed to help you taste bad? We looked up the the drug used for the CT and it was a L1, the best you can get and safe to breastfeed. I wonder what they will say we I go. Yeah, I am going to throw that book in their face if they say anything different. I am sick of wrong information!

My hubby was great tonight. He was real. He was great tonight.

I told another friend tonight. That family is wonderful. She said don't think ahead. Which really clicked for me. (Natalie may have said that too but I can't remember since I was in this fog.) I will really try hard to do that. I think that might help if I can do it. But these thoughts keep coming.

I went to do laundry. I felt ok doing it. Normal. For a few minutes.

Yes.

2010-05-19T14:57:00.003-05:00

The answer is yes. The doctor is not dumb. She knew. My friend, sister, mom, husband had hope. I wasn't even shocked when they called. I cried when I told my friend since I had to say it out loud. This can't be! This can't be.

I went out to the van in my nightgown with the baby to call my friend. Called my mom, called my sister, called my husband at worked but hung up. I can't tell him at work. But he won't be home when I leave for the dr appt. He can still have hope of a no for a little while longer.

I come in and all of a sudden I get the feeling I get on the roller coaster and it starts up the hill. Your stomach is all a flutter and you think "What was I thinking!?!?" I don't want to do this. I don't want to do this but just like the roller coaster it is too late to get off it is going over that hill crashing down fast. Accept I didn't ask to get on this ride! I don't want to do this!

The kids came home and was here during all of this. I am sure wondering what am I doing out in the van with the baby in my nightgown and mom said we could have all the popsicles.

Off to the dr. Now more waiting. I need more answers. I have so many questions but don't know what to ask or what to do.

2010-05-19T06:32:00.003-05:00

My mind is still racing can't stop thinking, but don't want to think but I can't help it.

I did take him to practice yesterday. That long hour ride is horrible it gives me too much time to think. I keep saying stop thinking!

I talked to my friend who was there on the bad day. I had talked to the doctor again, she did not give me any hope. My friend did. Though, which is better false hope that will be dashed, I don't know. I did feel better (that being relative now) after talking with her. It was weird to talk so rational at times about things. Like we were talking about some mom's call. A mom who calls and is crying or emotional or her doctor tells her baby is not gaining enough. And then my friend and me talk so calmly on how to solve the problem, what information to give to the mom. Right now I am not there. I am the emotional, crying mom. It felt weird, even stupid, to be talking so rational and calmly about this.

But I did sleep last night. Sleep is wonderful. I had regular dreams. My last refuge right now. Please let it stay that way, don't let this seep into my dreams.

Outside

2010-05-18T13:27:00.005-05:00

My first time out since Monday. And it is only Tuesday. Went to get my license since I lost it. I had just been there a few months ago everyone seemed in the grind and unhappy. Today everyone looked happy and friendly. Why did it seem that way? They have something to be happy about? I wonder who is sick. The old people look so great. I want to be old.

The lady behind the desk says "I get to help the Princess!" (my only daughter usually wears a princess crown as her headband) "Aren't girls great! I love mine, you're going to have so much fun with her as she grows up. All the things moms and daughters get to do together."
Instantly my eyes water up. I quickly turn away. Will I? Is what I think.

Will things like that always get to me?

Dr. office called, moved my appt up to tomorrow. Why did they do that?

I am supposed to take my son to practice. I always do on Tuesday and Thursday. I am so tired. I stayed up till 3 am and up at 7 am. It will be weird being around people.

Color my hair

2010-05-18T07:44:00.003-05:00

3 days before I lost my drivers license. I have to go and get a new one, which means a picture. So I bought a box of hair color to look good for the picture. I get grays thanks to my dad who always had early gray hair. Since I have really thick hair, which everyone says is great, but I had the awful gray hair with it, I would always say, "I would rather have gray hair than no hair." Yep, I would rather have gray hair than no hair.

Why am I thinking about this???? Because all the bad stuff has been pouring through my head so fast and constantly that I have finally gotten to something lesser like this. And maybe because it is easier to think about this than all the other horrible things that go with this. I don't want to think about what is worse but it keeps bubbling up and I keep trying to push it down.