Friday, November 1, 2013
I got my results back---CEA (the blood test that can help detect if the cancer is back but is not always perfect) was normal, super sigh of relief about that! But then dr tells me my liver functions are rising, they were just a little high from the blood work a few months ago (which I didn't know!) and then with this lab results it went up even more. So the plan is to take more labs in a couple of weeks to see if it continues to go up. If it does, then an early CT scan. Right now I feel (and I think the dr too) it is not the cancer spreading since my CEA is normal and I don't have jaundice or other red flag signs. The only one sign I have right now is the stomach pain I have every day and I have had that for awhile and that is from the radiation damage. So I am ok emotionally right now, though I do look often at my eyes now, watching for yellow jaundice eyes.
Sunday, October 20, 2013
Am I weak or am I strong? I feel weak because I am handling everything horribly but think I have to be strong to continue on day after day. I will never get over the fact that I feel so horrible AFTER I am in remission. I can't even believe the cancer is gone and that it won't return. I never felt like this before I was dx with cancer and told stage 3b with a T4 tumor that spread. Cancer TREATMENT left me broken. It ripped me apart and my marriage apart and a mom who is not how I want to be. It takes all I got to get through literally the crap I have to deal with. It gets to me and I break down. I get so tired and warn out of ignoring and pretending. The mindless facebook/iphone games help distract me. I have the warning at the top of this blog about how this will not be nice reading, like I wrote before, this is only half the story. I have started to write down all, the whole truth for after I am gone. I want it to be known, I want people to known why and what happened to me. And here is why: I had a freak out moment, everything was getting to me, and I told someone things not written here. She cried and I really don't think could handle the info, and gave me $60. I guess the only way she could think to help me. The money was much needed and appreciated. At least they tried to help me in their own way. It was just the realization that people can not handle the things I am going through and I can not talk to people about it. I feel so alone. I even know I can not talk to my doctor about it! They don't want to, they don't have time, and they have no help to offer. It is just the way my life is now. It just sucks they didn't tell you things. I go Friday for tests and results on Monday. I really wish I could just get a phone call for the results. I hate going to see the dr, it is just useless waste of time. I have had a few panic attacks this past week when my mind wonders to the thought of doing chemo again and how my messed up life will be turned upside down even worse.
Friday, July 26, 2013
Wow. Wow. Wow is what I think of the book The Emperor of All Maladies- The Biography of Cancer. It is a must read. Even though I knew some of the history of how barbaric medicine has been, I cringe as I read it, the details. The people who had the cancer, how much they suffered and endured for the future of cancer. Here is some of my thoughts so far-- I am about half way through. It is striking how young cancer research and knowledge is, and in my opinion still is. The most shocking thing is that this is a history of cancer and starts at the beginning BUT as I am reading, it is like it could have been talking about cancer NOW. Amazingly, the doctors say and think just as they do now. It is the same attitude and over confidence and promise of "a cure is in reach". I swear I see a news article every week about some great new promise of a cure and THIS is the way to cure cancer. The theme over and over is the doctors holding fiercely onto whatever theory they had and not moving forward and very skeptical of doctors who have a different idea and it taking such a long time to over turn and try new things. It is amazing how much of those ideas are still deeply held. I have encountered that in my cancer treatment. There is new thinking from doctors that are doing studies about people *like me* who have a complete response to chemo and radiation that surgery may be skipped or delayed and do a "watch and wait" approach to such radical surgeries. The 4 surgeons I saw all dismissed that option as crazy and not wise and wrong and basically implying how no doctor should agree to "watch and wait". I even had a falling out with my doctor over this (refusing surgery). The other thread in the cancer history always seemed to be more and more, more surgery, more chemo drugs. If a little was good OR bad, more had to be better. The section on cancer prevention was very revealing--we are not trying to prevent cancer, the money is not funded for that even though "the only intervention ever known to reduce aggregate mortality for a disease--any disease--at a population level was *prevention*." The section about smoking and the non accepting fact that smoking can cause cancer and how the tobacco industry did everything to not let the connection be made and deceive the public makes me think or the formula companies. They use deceptive marketing practices throughout history and *currently* to deceive the public and have no care about putting the health of babies and moms at risk and continue to do so and fight it despite the overwhelming evidence that formula causes illness and lack of nursing by moms causes illness in *moms* too. But, it is a business and profits come first, not health and not prevention. Both tobacco (was) and formula (is) advertised in medical journals touting how great they are. Can't wait to finish the book, wonder how it ends. ********************************************************************************* A few days ago I had a dream that seemed so real-- I could walk without it hurting. It seemed so real that when I woke I really thought just maybe it won't hurt anymore, but of course it wasn't so.
Monday, July 1, 2013
Having another sick day, which leads to my kids seeing me feel yucky and in pain. It gets me down and mad and I blurt out to my son who is is 11 years old and in the car with "Do you remember when I was well? I wasn't always this way! I used to be normal and well!" He answers, "No, I don't remember anything except this." AND he was 8 years old when I was dx! Is it that he really was too young and can't remember anything OR is it that this cancer has taken away and even erased all that was normal and well of me. I have three children younger than he was at the time of my dx so surely no hope they remember me BEFORE. Should I even ask my two children that are older than him if they remember me BEFORE? OK, typing this in a public place, must stop crying! At least I am in a hospital where it would be ok to see someone crying. But I HATE crying!! I am so sick of ME crying but I can't control it, like I can't control anything else that is wrong with my body. I once was thin, and happy, and not a worry about bathrooms, stomach pain, foot pain, or cancer or dying. All of me who they now know is a fat, sad most times, in pain, running to bathroom, can't walk far mom. I really used to be a good mom and now I am a horrible mom. I hope they know one day that I am trying my hardest but it is so hard for me and this is the best I can do. I will have a few days that are "ok" (I would not say "good" days, far from it!)and then I will think maybe I can be ok and then the real bad days happen and sends me back to "Knock, knock sucker, don't forget you have cancer and this what you get to deal with." This is the price of cancer treatment. My friend said she survived cancer (so far) but hasn't survived the treatment. THAT is SO TRUE! I live everyday (yea I'm alive :-) ) with the constant ongoing side effects and that gets me down so much. And to educate you all- cancer is NOT the same cancer for everyone and treatments and side effects can be SO VERY different. And just because someone is done with treatment DOESN'T mean the side effects are over.
Sunday, May 26, 2013
It has been 3 years (as of May 17) since my dx. I can't believe I made and still in remission since I was told I would not make it this far. How much farther can I make it??? That occupies my thoughts a lot. It makes me questions everything. Just planning the summer and the coming months for my children made me apprehensive. Should I make all these plans, what happens if it comes back, how would things work out then?? I have one son who *I* drive one hour to gymnastics practice 5 days a week. Who would drive him, could my oldest who is 18 do it, would he, is it too much to ask him to do that? Signed up my daughter, 2 of my sons for things too. One person can't do it all. I need to be here and functioning! Took my baby (now 3 yrs!) to a preschool speech evaluation, he qualified to be in the prek speech program. At first I thought it would just be the speech he would go to and not the full prek program. It took me off guard. I really want to spend time with him BUT I guess I should say yes to the program since if he doesn't go he would have to wait till the following year to get in and what if I needed him to be in prek, if I was sick again it would be a big help. I hate having to think about everything in terms of "if it comes back". I feel like living in limbo, I can never imagine a day where I get to have the "sigh of relief" it is over and ain't coming back.
Tuesday, April 2, 2013
I'm still in remission according to CEA, bone scan, and a ct scan! Who knows what is wrong, suggestions have been herniated disk in back, to just the nerve damage from the chemo. I am not feeling so bad like I was but still have the times when I feel weak in my left leg and stumble. And a new pain in my right back calf. So I will just continue to believe it is not cancer from the test results. My dr friend said it would take a MRI to see if it is the disk thing. Ugh, I decided against pursuing it more. I really really really don't want to get back on the dr treadmill. My onc just seemed to not care since the tests came back clear. So I just push on with another annoyance. I will have another CEA blood work at the end of April. I have been able to FINALLY find a shoe that is not crocs that I can wear! For any chemo damaged sufferers out there it is the merrell barefoot tennis shoe! I still had to buy them a size and half bigger. But they feel like the original crocs but of course look so good. Only down fall is they cost serious $$$$$ I would never before pay that much for shoes. I was able to get one pair for $60 at the outlet and another regular price at $90. So hopefully these two pair will last me a long time! Which they should since I don't walk that much and I have gotten so fat which has made me mad. Damn damn cancer has ruined my mind and body. There was a recent study about happiness, quality of life sort of thing in cancer patients and they found colorectal cancer patients have the lowest over other cancers. I know why, oh the things I don't write here. No one talks about this cancer, no one knows about this cancer and the effects, it is an ugly cancer. Heck my spell check always red underlines the word colorectal as wrong, it doesn't recognize this word! Yeah, who would want to write about this! Who would want to read about this icky cancer. There I go on a spout off, yeah, I'm still down a lot. Yes, I am glad I am in remission but don't tell me to stop hating what this has done to me and how it has ruined things I haven't written about here.
Wednesday, February 6, 2013
Like a pregnant lady, that is what it is like to live in remission land. Now, only those who have been pregnant will understand this and more so those who think back to that first pregnancy. Those darn braxton hicks contractions, they cause the pregnant mom to wonder "Is this it?" many times through out her pregnancy and any "off" symptoms to wonder if something is wrong, do I call the dr/midwife or not? And then the shame of having gone to the hospitial or calling the dr/midwife in the middle of the night and nothing is wrong and you are not in labor. That is where I am and that is what it is like, to call the dr or not call the dr. I am gun shy because I did call the dr last year when my arm was hurting. I waited 3 wks to go to the dr and then got an xray and they said all was well. And then 6 wks later my arm was better. I must have hurt it without knowing and a sore muscle can take that long to heal. Felt stupid and got all worked up over nothing and several dr appts to determine it was nothing. SO NOW I am in that place again. I have been "off" for a few weeks and now my left lower back hurts. What makes it worse is that it hurts more to sit or lay down! And you know my feet hurt to stand long periods of times! Sheesh! I feel broken. I read another's blog who died from this cancer and it was mets to her spine to find clues and comfort that, that is not me, and tell myself that the mets to the spine is very rare and most likely would be mets to my lungs or liver first. I sit and try and figure out what is going on. Is it really a problem or not. It is not that easy has to say go to the dr. Going will result in several office visits and tests and weeks waiting for results. And the stress of it. I just don't want to know bad news right now. I can't even let myself go that far to think what would happen if the cancer was back, I would have a full on panic attack. I have to be fine, I have to have normal back ache and nerve damaged feet causing me problems. Please pray I am fine. For now I am going to wait to get my lab results back, which should be Friday or Monday, if they are fine I will wait another week to see if I get any better and if not I guess I will go to the dr and pray I get to have the shame of going to the dr for nothing. And just in case some are wondering, yes I am still comfortable with my decision of no surgery, everyday I am glad I didn't have it, and even if the cancer comes back.
Tuesday, January 15, 2013
Can't believe it has been since September that I have posted here. I have "written" a hundred blog posts in my head while I lay in bed unable to sleep or drive in the car for the long 2 hour trip to take my son to practice. The thoughts don't stop even though I haven't written them here. Cancer took another, a young boy, who fought 4 years braver than anything. His family also fought that battle. I went to his funeral, it was very hard. I had not gone to any other funerals of my friends that had passed from cancer. It reminded me why I have not gone to church, I would just cry. I hate crying, I am so sick of crying. I am crying while I type this! I had a flash of seeing my children at my funeral, and my daughter's face who was not understanding where I had gone and my youngest, the baby, just happy because he doesn't know anything. I pushed it out of my head and just prayed for the boy's family. I did have tests back in Oct and was still in remission. I will have more tests in Feb. and then in April. I am still the same emotionally, walking still hard, feet hurt. The only thing that makes me not be so down is the thought that this is better than having it come back and then say a pleading prayer to have it stay away. It feels so wrong for me to pray for that, it feels like I am asking for too much, too greedy, too undeserving, too much to hope for, but I pray that for my children and that is why I ask for continued prayers from others. My friends gave a much needed gift to me and my children. It was needed in the physical sense for sure but what I got was a gift in the way that was emotionally a huge gift. It reminded me people care and continues to lift my spirits whenever I think about it.