Saturday, December 31, 2011

Cancer Treatment Illness Induced Freakouts (that sounds medical)

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

Sunday, December 25, 2011

Been over 3 months

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

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

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

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

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

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

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

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

Thursday, September 8, 2011

My Last Baby

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

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

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


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

Thursday, August 25, 2011

PTSD trying to forget about cancer

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

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

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

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

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

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

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

Thursday, August 11, 2011

Taken away

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.

Thursday, July 21, 2011

To Lisa, the Dancer

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 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
(Sheri, I hope it is ok to share this!)Thinking of both you daily, Sheri and Lisa!

Wednesday, July 6, 2011

My family

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

Saturday, June 18, 2011

Life is for the living

A song someone shared with me and wanted to share:

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!

Tuesday, May 24, 2011

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

Tuesday, May 17, 2011

Sisters, it has been one year

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 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.

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.

Saturday, April 30, 2011

It's been a couple of weeks

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.

Thursday, April 14, 2011

Downer day

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.

Monday, March 21, 2011

Neuropathy makes you feel crazy

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.

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.

Friday, March 18, 2011

There's always something unexpected!

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


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.

Thursday, March 10, 2011

So done

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.

Sunday, February 20, 2011

What a GREAT weekend!

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!

Tuesday, February 15, 2011

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

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".

Friday, February 11, 2011

Of course nothing is ever simple!

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.

Wednesday, February 9, 2011

What's happening, at least at this moment

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!

Monday, January 31, 2011

Travel=sick, but it was worth it

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!

Thursday, January 27, 2011

Give thanks to God and pray for me

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.

Monday, January 24, 2011

Off the merry go round, I am dizzy

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.

Sunday, January 23, 2011

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

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.

Friday, January 21, 2011

Hard day

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.

Wednesday, January 19, 2011

PET scan equals forced solitude

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.

Monday, January 17, 2011

Crying over no quantity

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.

Saturday, January 15, 2011

Sweat the Small Stuff

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

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.

Wednesday, January 12, 2011


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.

Sunday, January 9, 2011

A Birthday

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.

Saturday, January 8, 2011

Just an update and who wrote this song???

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.