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.