blah blah blah

You know how sometimes you are talking to someone and you just lost interest in the conversation? This is what happens when I go to my Dr. I hear blah blah blah, tumor blah blah blah. Basically that is all I took from our conversation on tuesday. He is just a oncologist, he doesnt know anything about surgery, blah blah blah. Just continue the chemo blah blah blah. I just was sitting there thinking of sticks and stones can break my bones but words can never hurt me, can't hear you... all those childish little sayings came flooding into my head, the only thing I didn't do was stick my fingers in my ears and start chanting. So in other words he had nothing good to say to me, and I trust him about 0% from what I did hear. Norm says I have to learn to have faith in my Dr's, I say ya when I find one that hears what I am saying and can explain instead of selling me a used car that doesn't run, but has a cute paint job.

Sorry, if it sounds like I am losing my mind,maybe I am. I am just frustrated with the medical community and am ready to just say ok time for a vacation, if all I am ever gonna hear is chemo, chemo, chemo, then I say blah blah blah, so now I am thinking I need to maybe check out other oncologists, other liver surgeons, maybe a colon surgeon, maybe I have been going about this the wrong way, maybe if I don't submit mayos records since these Dr's act like Mayo is God, then maybe they will listen to me. My Dr looked at the same report he saw weeks ago and acted like well mayo had suddenly appeared with their opinion, hmm too bad he had those papers last time I was there, I am just a number, not a patient, not even someone who has rights, or deserves to be given a chance at life.

6 Months ago today

6 Months ago today I found out I had a mass in my colon and spots on my liver. It would be 12 more days until I was told it was cancer. I am so thankful for life. I have learned so much in the last 6 months. I never ever imagined 6 months ago how awful our health care system really is. Don't get me wrong, I am thankful for our healthcare but who could imagine that trained physicians could look at the same picture and come up with two different ideas of what is. I always thought there was a solution for everything. Who could possibly think they would tell me they couldn't just cut this cancer out and everything would just be normal again,. What is normal anyway? I had no idea that if you become disabled, there is a 6 month waiting period before you get any financial help. What do people do that are not married and have no family? Do they simply just fall between the cracks? I had no idea how strong my family is. I never imagined in all of my years that I would become the center of their attention. I have never ever wanted to be the center of attention. I would rather just mull thru and get past it by myself. I have learned that I need my family. I need their love, I even need their help. That is probably the toughest thing of all, learning to ask for help. I have learned I have amazing people praying for me and sending me positive vibes. I have learned as I said before that I am just a ant in this world, so small and yet I hope I have touched many. I know there is more than my earthly body waiting for me that I can not yet even imagine. I have learned to trust in God, as ultimately he knows my plan. I would love to be cancer free, but would never trade the love and knowledge I have received. I hope I have stopped someone else from getting cancer. I can go on all day about how I wish, I should have, but it's not going to change today, and today I am thankful to be able to type in my blog and to put my feelings out there. I still pray for miracle. I am a fighter and I will continue to fight. Deep inside I think, just give me a chance and I will show everyone what a fighter I am, but then I already know they already know that. I am thankful for today, because none of us are promised tomorrow.

Keeping it real

Well Saturday night I had the worst pain ever in my lower left side. I was sure it would never go away and when it did, it just made me feel like cancer was showing it's cards. I have felt pretty good over the last week and wasn't expecting the pain at all.

I am getting scared for tomorrows Dr visit, where we will talk about my colon and surgery. and I am getting anxious for chemo on wednesday. I am thankful I can have chemo to reduce the beast hopefully to nothing.

Please keep me in your prayers. It would be so good to get some good news from somewhere. My scans are coming up next week, and that is always scary, especially with the new chemo.

What cancer cannot take away from me

I have really been depressed lately as I am sure you have seen. Yesterday I saw a preview of "women on death row" and one woman said in it, I am afraid to die, but Iknow I will be with God. Well that set off this whole thing in my head about how at least those women knew when they were going to die exactly and how much I felt like them, and every Dr saying no was like a appeal being turned down, pretty grim I know. Let me tell you why I am NOT like them, I get to experience fresh air, beautiful sundowns, watching a total eclipse with my husband by my side, the phone ringing with a caring voice, visits from my family, the sound of laughter, and most of all the knowledge that I am not a murderer like those women on death row. I have lived my life the best that I could, I haven't been perfect but am thankful I have God to forgive me of my sin.

Jackie sent me a card a while back and it talked about what cancer can not take away from you. I was going to search for that today but decided I already knew the most important things cancer can not take away from me, My family, great friends, and most of all the great memories I have had along the way. No, cancer can not take away the memory of my husbands touch, grandchildrens first cry, the memory of watching my oldest grandson skylar look around in awe of the world that awaited him, my son KJ, carrying his babies from the delivery room, the look on his face, My son, Erics look of complete love when he saw his son for the first time. My daughter sarahs face when she found that perfect wedding dress, cancer can not take away the strength I have taught my children or the gentle touch of my husband reaching out for my hand. My sister Sherrys comforting reach to hold my hand when I am down or the sound of the laughter from my sister Debbie when she made me smile.My brothers gentle hug to let me know I would be ok no matter what... These are the things cancer can not ever take away from me and I am sure there is a million more. Most of all thank you God for giving me the strength to realize how much I have accomplished in my life, and thank you for giving me such wonderful people to share it with.

Just a update

I have had a few people ask for me to update so thought I would. This chemo is alot better than the last chemo, I have had temperature fluctuations this time, down to 94.5 and then back up to my usual these days of 97.7. I have also had on and off nausea I assume from this new chemo. I am also losing lots more of my hair, it comes out in handfuls now if I run my fingers thru my hair. Hats are in my future. I have been having a little pain the last couple of days which of coarse makes me wonder if my tumors are growing instead of shrinking with this new chemo.

I faxed my records off to sloan ketterling hospital in new york, they are supposed to be the top dogs in cancer. The nurse from there called me yesterday to tell me they couldn't give me an appt. She said I had already been to two great places and I should just go with what they say, which is no surgery. I read all the time about people that have unresectable livers but after chemo they become resectable, I am not sure if I am just in the wrong line or maybe I just refuse to accept no surgery is my best option. I still have an appt at Barnes In St Louis in March and I am going, maybe it will just be another opinion and maybe it will be my miracle.

I am sorry I am always so negative on here, that is why it is so hard to post anymore, I want everyone around me to remember me strong and I don't even know how that will happen anymore. It is so hard to accept a diagnosis of death In a very profound words from my husband I asked him if he realized I was dying, he responded with" do you realize your still living?" Pretty profound and it has given me a lot to think about, he is right I am still living. One more reason I love him so very much, he keeps me real, he keeps me grounded and even yesterday his response was oh well, we just move on. He is going to start emailing some Dr's in hopes that maybe one will see a glimmer of hope and respond. I guess life is just like death in the fact that I can not comprehend what is going on now anymore than I can comprehend what heaven will be like. I feel like a ant sometimes, so small compared to what it's really all about. I thank God for being given the gift of today, no one including me is promised tomorrow. The bible says everything is in God's perfect plan, if I wait I will see his plan. Again, I feel so small in this massive thing called life.

Wow, what a difference

Well yesterday was to be round number 11, and it actually turned into round number one. The Dr decided my body had reached maximum toxicity from the oxalaplatinum and also decided to withhold the avastin since I have been having bowel problems for the last couple of weeks, Scary stuff in a way, exciting in another way. Basically what they did was pull out the next "big" gun rather than putting me on maintainence chemo and waiting for growth of the tumors as mayo suggested. This chemo hopefully will continue to shrink my tumors, hopefully making it possible to have liver resection surgery at some point. Well at least that is my take on it from my reading, Ididn't get to actually talk to the Dr. It is scary that they withheld the avastin, but with the problems I have been having he wants to talk to me next week about possible surgery on my colon. This is kinda scary too as he said last week if they operated on my colon, my liver tumors would take over in the 6 weeks it takes to recover from surgery. Having said that, if the tumor in my colon is moving or has moved back into my colon and could immenently cause a blockage , then continuing the avastin would make no sense as the odds are not good at even coming out of the operating room if you have avastin in your system. So, all in all, this is not what I was expecting but am ok with it. It is amazing how much better I feel just from having the oxalyplatinum removed from my chemo. Round 10 was way too scary, I was so out of it and I have to weigh that with how much better I feel today and know it was time to get me off of that. I wish I could have did it 2 more times and am scared for what the future brings but know either way truly it is in God's plan. I do have lots of nausea this time but hoping that is temporary. The side effects so far have been 200% better. I can even drink cold drinks again, go outside without my mouth covered in the cold and I can walk. I can feel the lasting effects from the oxalyplatinum in my tingly fingers and feet, and as I said I would have did the next two rounds just to kill off more cancer, but hopefully this way we can kill off more cancer, who knows maybe this treatment will work better than the last and kill off ALL the cancer. So, in brief I am off of folfox with avastin and am now on folfiri w/o avastin til we see what my colon is doing. They can add avastin back in if my colon works itself out,

What I really need right now is prayers for the right answer to be shown, and for My Dr to have the knowledge to do what is needed to keep me hanging in for the longest possible.

As always my sweet sister Sherry took me in for chemo. She is so good to me, I love her so very much. I can't forget my other sister Debbie, that sent down the most amazing tuna noodle casserole and chicken noodle soup. She also made me some of my favorite filled pillows to keep me warm. My sisters are the best in the world and I love them so very much. I am so glad I have them in my life.

Smiling Eyes

Kristi came to take me to get my labwork done yesterday. Korban, my grandson was with her and as I turned around to look at him, I could see his eyes smiling. You know that genuine, you are loved look from a childs eyes? It's been in my mind ever since. Those beautiful smiling eyes looking right at me. My grandson loves me without any care in the world. He is 2 years old and I call him lovingly booga. I have no idea where I got his nickname, but he is my little booga, and he makes my eyes smile when I look at him. Actually all my grandkids make my eyes smile. They are an inspiration of what can be. I pray that they go far in life. They are just like blank little canvases waiting to be painted, to have their lives mapped out and to make a mark on this world. I finally figured out how to upload a picture, tell me, does this not make your eyes smile?

Getting ready for round 11

I guess I title my blog so I know what treatment I am on. This has been a usual after chemo week, well kinda. I had horrible pain on Friday, Norm ended up taking off work, rushing home and taking me to the Dr. By the time we got to the Dr the pain was all but gone. The new pain pill took awhile to work but when it did, I was a drugged puppy. I am scared of this next chemo, I remember how bad I felt with the last one, I hope I am just not too stupid to know when enough is enough, I pray I get thru another treatment. It scares me alot. I suppose I read too much on the internet and know what can happen.

I made a appt with another surgeon in St. Louis for March 10th. I am not sure what else to do. Norm's Dad asked me what did I expect to gain from going to another Dr, I am not sure, hope I suppose, a girls gotta try right? Besides, it's my part of the not giving up. I try to be realistic, but sometimes that just leads to so much negativity in my mind, I am not sure most days what to do. I know that cancer will eventually take my life, but the hope part of me says to keep fighting, keep trying, keep searching for the answer and many days I know I already know "the" answer but perhaps I can't just accept it, that's the hard part, the absolute hardest part of all. How do I look into my husbands eyes and know that one day I won't be here anymore?

I hate cancer, I hate what it has given to me, and I hate even more what it has taken away from me. I hate that it steals away most moments in my life. I have about 15 seconds when I first wake up that I am me again, and then that bastardly cancer enters my mind again. I hate that people look at me weird when I am out anywhere, I know I look sick, I KNOW, I hate the way people look at the wires placed to far out from my port to my neck, yes I know I look like frankenstein, it's the only option they gave me for getting what they call my life prolonging medicine. I hate that stupid Dr that put the "fat" people port in me and it sticks out like a sore thumb. I asked Norm to make them take it out when I die, I don't want to take it with me to heaven.

Up and down

This has been a unexpected tough week. Mayo called me on Monday since we had sent up the ct and pet scan for them to look at. She said they feel that there hasn't been anymore shrinkage in my tumors and that perhaps it is time to look at stopping chemo or going to a oral pill chemo and seeing what happens with my symptoms from last chemo. She also said she talked to two different surgeons and they both agreed there is just too many tumors to do surgery. I felt like I had been stomped on again. Last round of chemo was really tough, and with every round of chemo I come home and tell Norm, no more chemo, I can't take it, so with mayo calling, it was like be careful what you wish for, ugh!!!!
Norm reasoned with me that the ct and pet scans had only been done a little less than a month since the last ct scan so we shouldn't show shrinkage.

We went to Dr Miga's yesterday and asked him what we should do. I said I don't know when chemo is too rough, I just know I don't want to stop chemo if there is a chance it is working. He seemed as dumb struck as we were since he said he had talked to my doc at Mayo and my options were left open. He said it is possible that we wouldn't see any shrinkage in less than the month and I should continue chemo as originally planned and get a ct scan in March. I just pray that chemo isn't too rough next week. I read so much on colon cancer and it seems that it becomes intolerable or the oxalyplatinum becomes intolerable much sooner than where I am at, so that is a good thing. He said I would know when chemo was too much because I woudn't do the bounce back, I would continue to feel like crap. He said, let's face it chemo is like going thru hell..

I know we are entering a new phase as chemo usually goes for 12 rounds, next week will be number 11. He did say we could just switch chemo without taking a break, if I could tolerate it, if that is what I need. I am putting my faith in God, because he is the only one that truly knows. Somedays I call all the Dr's used car salespeople, I feel that they just want to keep my business, and then somedays like today, I realize they are just human as am I, and know they don't have the answer, but I am thankful my new local oncologist is always positive, he even said to me, we aren't seeing growth in your tumors, everything is ok at this point, so I just have to go with it for now and pray that I can get thru the next two rounds of chemo. I have a ct scan scheduled for March 3.

I am so lucky to have such a wonderful family. I can't count the times they have been there for me, somedays I am just plain crazy out of my mind, and they continue to be there. I remember a day back in early August when us three sisters went to Wisconisn and I remember saying how lucky we were to all be healthy and have kids and grandkids that were healthy, little did I know then. I am so thankful that I can now say both my sisters and my brother had colonoscopys and other than some polyps that were removed, they are ok. I told them all in the beginning that I would take the bullet for all of us, and I am glad I did, I can't even imagine if this happened to one of them...

Feeling better

I am feeling better, hard to type still with the numbness in my hands so gonna keep this short, thanks so much for the prayers and words of encouragement, I will keep fighting, and keep living day by day
wanted to pass this along from the colon club, very important info, get checked please
ABOUT COLORECTAL CANCERIn the United States, one person is diagnosed with colorectal cancer every 4 minutes and someone dies every 9 minutes of this disease.Colorectal cancer is the second leading cause of cancer death in this country. Approximately 147,000 people will be diagnosed with colorectal cancer this year, and almost 57,000 will die from the disease.Colorectal cancer is a highly preventable and treatable cancer. Tens of thousands of lives could be saved every year through proper screening. Almost all colorectal cancers begin as polyps in the colon that can be removed during a colonoscopy. When polyps are removed, colorectal cancer can be stopped before it even starts.When caught early, colorectal cancer has about a 90% survival rate - but when caught in later stages, there is only about a 9% survival rate. Currently, only about 37% of colorectal cancers are caught at the earliest stage, when it is most treatable.A personal or family history of colorectal cancer, certain other cancers, colon polyps, or other bowel diseases increase your risk of developing colorectal cancer. Anyone can help prevent colorectal cancer by exercising regularly, eating a low-fat high-fiber diet (whole grains, fruits & veggies), maintaining a healthy weight, and not smoking.
SYMPTOMS OF COLORECTAL CANCER
The most common symptom of colorectal cancer is no symptom at all - that is why it is critical that everyone get screened even if they don't think anything is wrong. If you are having symptoms, you must get tested!
the most common symptom is no symptom at all
change in bowel habits (diarrhea and/or constipation, narrow stools)
unexplained weight loss, vomiting
anemia, lack of energy
blood (often not visible) in stool or from rectum
abdominal pain/discomfort (gas, bloating, cramps, feeling that bowel does not empty)
IF YOU HAVE SYMPTOMS OR A FAMILY HISTORY,SEE A DOCTOR.BE PERSISTENT UNTIL YOU GET AN EXPLANATION.