tag:blogger.com,1999:blog-15534323576370393722024-03-05T04:42:26.232-06:00Cancer caught me.A 37 yr old mom with one great hubby and 6 amazing kids and 2 puppy dogs and oh, yeah, cancer. I have to get these thoughts out, so this will not be nice reading. You've been warned, turn back now.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.comBlogger140125tag:blogger.com,1999:blog-1553432357637039372.post-87262376791867697372018-03-19T22:57:00.000-05:002018-03-19T22:57:04.090-05:00Worn downOh, how you worry<br />
Oh, how you're weary, from fearing you lost control<br />
This was the one thing, you didn't see coming<br />
And no one would blame you, though<br />
If you cried in private<br />
If you tried to hide it away, so no one knows<br />
No one will see, if you stop believing<br />
(Oh My Soul by Casting Crowns)<br />
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Yep, so very weary. Yep, I have no control over anything. Yep, I never imagined my life would have turned out like this is a huge understatement. Yep, I do cry in private because I avoid the public because I could easily cry there. It is the conflict of hiding all of this and then wishing everyone could really know but they really wouldn't want to know it all. Not even the drs I encounter really want to know. I have stopped believing things will get better.<br />
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Can't believe it's been that long since I have posted. I hate to post again the same horribleness, that is why I just don't post. I am no better mentally and physically my body has gotten worse. Cancer still stable but I do have "things" that keep popping up and then they do more tests and then more watch and wait. Drs appts stress me out and they happen frequently. The surgery wasn't a forever surgery and things don't "hold" together like they are supposed to. As time goes by it causes me more side effects and pain. I am trying so so hard to be ok, but just hanging on mentally and physically. I still avoid social situations because of the unpredictably of my body and pain. If unavoidable to be in public and interact with people (which I go to great lengths to avoid) it is on pain meds. It is mentally and physically exhausting to be with people. I still have a huge hard time with the question of "how are you". It is the worst question ever because it is decision to either lie and say fine or tell the truth, which I still can't really say the whole truth. Do they really want to know? I wish I could be real and say yeah I am doing horrible. But I can't tell you that since I should just be happy I am alive. I did recently answer that question saying that I am having a hard time with pain and ongoing medical problems. And I get the deer in the headlights look. It's not their fault but I am so sure they just want me to say I am ok. I am alive but it is so freaking hard everyday. To me it feels like I am trying so hard everyday to go on. I am giving it my all. I am coping the best I can.<br />
<br />Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com9tag:blogger.com,1999:blog-1553432357637039372.post-37861093740642876502017-04-18T09:42:00.000-05:002017-04-18T09:42:05.128-05:00I can always cryI don't write anymore since it is just more of the same down things. So you can read this post or any of the older posts and they will sound the same. Who wants to hear that. I don't want to hear me. I hate complaining but this is my reality. I do my best to stay numb. I'm not even trying for happy. Just being. I still play the many mind numbing game apps to keep me from thinking too much.<br />
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I can always cry. Still. My dr says it is because I have cancer, stress, anxiety, and depression. This is nothing new. I got that the day I got dx. I HATE that I can cry. I'm always on verge of crying. I HATE that I cry. I always try not to cry but it doesn't work. I am crying right now! When will I not have anymore tears? When will my eyes be dry and give up? I HATE that I can't stop it. But to quote a song "I'm tired, I'm worn--My heart is heavy from the work it takes to keep on breathing--I've made mistakes I've let my hope fail-- My soul feels crushed by the weight of this world--And my prayers are wearing thin--I'm worn before the the day begins" There are better parts to this song, but this part is me. It is like I'm in quicksand. I can't get out. Trying to just makes me feel worse, so staying still is the best I can do. I have no desire to go anywhere. I still only go to the cancer group and with those who have cancer makes me feel like it is ok. It takes a lot physically and emotionally to go out, even for my kids to their things. It is mentally and physically exhausting. It is like being an actor who is having to improv. I'm not being my real self, just trying to act like someone else. Facebook is as close as I get to going out in the world.<br />
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My physical health influences so much of my mental health. This past year I have been stable, no huge growth in my lungs so far. Cancer blood marker stable. Liver function horrible as usual. It really is a miracle stage 3 to recurrent stage 4. I still wonder how I get stable after all of this and others don't. I wish I knew so I could give it to others to have too. Weekly painful partial blockages and daily neuropathy pain and exhaustion being the some of hardest hurdles that get me down. Other things that I can not bring myself to type out.<br />
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This past year was also consumed by getting help for my son who hurt his hip in gymnastics. It took forever to get a proper dx and then find a dr who could do surgery on him. We had to go all the way to Shriner's in St Louis for surgery and continued follow up. Kids are so different in dealing with medical crap. My son didn't seem to get down and just pushed through. And it was hell the recovering and the surgery. He was bedridden for months and had to lay flat and then relearn all over again to walk and get strength back. He always had hope. At least he never showed me anything else. I wish I was a superhero like kids. Two kids in the small world of boys competitive gymnastics circle in our region got cancer. WTH is all I think. Cancer in kids makes no sense. It does seem like kids handle things better than adults. I wonder why? How can I be more like a kid? Is it that they don't fully understand things. Is it that they are surrounded by this nothing is more intense and powerful than a parents love and hope for them to be well?<br />
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I still can't go to church, you know the whole crying thing stops me from going. And their dad ain't going to get up and take them without making a fuss so why ask. And I can't just drive and drop them off at the door. You have to sign kids in and out and then they would wonder why I don't stay at church and even may say I had to stay since the kids are there. They even had a family VBS so of course my kids didn't go to that because of me not being able to do it. I hate that my kids don't get to go because I me. I try and teach them some things at home. Like I did an Easter lesson, yeah but it is so hard because again the crying. I have to get into a mindset of I am teaching you math (something that doesn't make me cry) because if I really think, I will cry. And I HATE crying for ME, you and everyone else can cry all they want.<br />
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So much is upside down and not right in my kids life. They may know this a little, especially the older ones; the younger ones, this is all they know. I just hope one day they will understand I tried my best, this is all I can do when I am in quicksand and trying not to sink any farther down.<br />
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<br />Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com10tag:blogger.com,1999:blog-1553432357637039372.post-47995970084624140292016-01-14T23:53:00.001-06:002016-01-14T23:53:32.570-06:00I get good newsFeeling so relieved! I got a stable ct scan of my lungs and good lab from my cancer marker, though my liver numbers were in the abnormal high range (though the dr didn't comment on them, so I guess must still be ok). Another 3 months of no chemo!<br />
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I am so grateful, but also perplexed. Why do I get the miracle of continued stable news and not others? I hate that others are just trying to stay here but are getting closer to not being here. I pray they get a miracle of more time for them and their families and friends.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com8tag:blogger.com,1999:blog-1553432357637039372.post-36716358315498480712016-01-07T22:56:00.001-06:002016-01-07T22:56:58.326-06:00Just Another UpdateI guess I never did the update from my September labs and scan but it was pretty good, cancer marker was good and scan only showed just the littlest growth in my lungs so that still puts me in the watch and wait mode. I was supposed to go right before Christmas and get scan and labs again but I put it off till January 11 since I didn't want any bad news while I had to be around the kids so much during Christmas break. So now the nerves start back up for Monday's appointment. I just know and plead it will be ok because I just feel like I can't handle anymore. I don't want to handle anymore. Whenever I let the thought of doing chemo creep into my thoughts I start to panic. Since my diagnoses my life, physically and mentally, as never gotten better only worse. I try to stay "ok" and find strength from some amazing people stories and think if they can do that I can do this. But it is so dang tiring to get up everyday and constantly tell yourself to not cry, stay strong, and keep going despite the physical pain and emotional pain. It is never ending fighting. I have been so so tired all the time so I feel like I have no energy to fight many days. <div>
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Another friend died of cancer, it was what seems sudden to me. But probably not to noncancer people. The outside world hears stage 4 cancer and of course assume they will die. But I think, I can't believe they died. I really thought a cruel joke when I hear and can't believe. I had just been with this person 3 days before and they "looked good, walking, driving, eating, drinking". Cancer doesn't care how good you look, because most cancer is on the inside looking horrible. Pain can be hidden with medicine and makeup and clothes do wonders to hide the ugly cancer. </div>
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I don't know which is worse: A sudden unexpected passing or a "you know it's coming because they are bedridden" passing. The sudden ones scare me because it makes me think it can happen to me at any moment and I am not ready. The long ones are prolonged sadness. And scares me to think of myself bedridden and all that means. </div>
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I've also been sad because something that gave me hope and joy has now turned into the opposite of that. That's all for now, I want to stop thinking and go play Angry Birds or Words With Friends to make my mind go blank. </div>
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com4tag:blogger.com,1999:blog-1553432357637039372.post-66588771245374682642015-09-20T00:36:00.000-05:002015-09-20T00:36:19.042-05:00Treading WaterI didn't write in February, March or April because I was so f'ing sick from the chemo. I did quit chemo and went into the watch and wait mode. My dr was ok with it and really could understand how bad I was doing.<div>
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I didn't write in May because I went to Florida for 3 weeks. My son qualified to National gymnastics meet down there. And we took a family trip to Disney while there. The beach was heaven. I loved it, I didn't want to leave Florida. The trip was paid for by an advance on my life insurance, that was great to have that resource but depressing that the life insurance people give you the money since they know you are going to die. </div>
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I didn't write in June because I had my ct scan that showed growth in spots on my lungs again. And you get to play the watch and wait and guess game. So I have another ct scan at the end of September. </div>
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I didn't write in July, August, and most of September because I am trying to soak up as much non chemo time as possible. The thought of more chemo sends me into melt down mode. How can I physically and mentally do more chemo?!? My body hates it, I don't breeze through chemo like some others can. </div>
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I didn't write because thinking about cancer sucks. And I go all day trying not to think about it without any success. It is constant fighting bad cancer thoughts away. My mental state has really gotten worse. And writing just hurts my mind so much right now. I am writing now only because I wanted to write something before my next scan. </div>
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It's been a year since my big surgery and it still sucks, still pain, still hate things about it. It messed my body up so bad, it only feels like it traded one bad thing for many other bad things. </div>
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I have to stop writing now, I'm so upset and crying. I hate crying because I am so sick of crying!</div>
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com11tag:blogger.com,1999:blog-1553432357637039372.post-21155981558107769082015-01-18T01:05:00.002-06:002015-01-18T01:05:45.691-06:00Really want to quitI am really sick of chemo. The sick days seem longer and my "good" days aren't that good. I just so so so want to feel better. I know it will take about 6 months after I stop the chemo to start feeling better and I just want to start now. I am seriously thinking about not doing the last month. Will that extra month even help or matter? My onc dr. says no one knows, he couldn't recruit people to do less than 6 months for a study. You know the whole thing with our society that more is better. I only keep thinking how the chemo is messing me up. I am not the person who will regret not doing it if the cancer comes back. I didn't regret not doing the surgery. Till this day I still think I am so happy I got those years without it.<br />
Chemo is hard on my body and my mind. Feeling like this, I have no idea how I would ever cope with "chemo for life". I am supposed to go back January 26 so I have till then to decide.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com8tag:blogger.com,1999:blog-1553432357637039372.post-2624914582158341272014-12-16T22:10:00.001-06:002014-12-16T22:10:22.078-06:00ChemoI haven't written because it sucks and I am horrible most days. I have to hold it all in and when I write it comes out too much and it is hard to stuff it all down again. I am sinking down and now feel like I see cracks in my kids too where they are not who they used to be and yet I just can't talk to them or help them cope when I can't myself.<br />
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Every third day after chemo I swear I will not to the next round of chemo. It is just so hard being sick and so much of the time. I hate being sick and fell like I will never be well again. I am half way through with this chemo if my scans come back stable and no growth.<br />
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On the medical side my cane really helps me not feel like I am going to fall all the time. I have a messed up port that gives nothing but trouble for every chemo. I have ear rocks aka benign paroxysmal positional vertigo<br />
<a href="http://www.mayoclinic.org/diseases-conditions/vertigo/basics/definition/con-20028216">http://www.mayoclinic.org/diseases-conditions/vertigo/basics/definition/con-20028216 </a><br />
So basically I get dizzy real easy and mostly when I turn in bed or move my head in certain positions. Supposed to see a special dr about after the holidays.<br />
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<br />Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com13tag:blogger.com,1999:blog-1553432357637039372.post-32577942184168683312014-09-25T11:01:00.003-05:002014-09-25T11:01:42.152-05:00What to know about meI think I may have written some of this before but I choose not to go back and read this blog because it is so emotional and grammatically hard to read since it is often written during crying spells, pain, and at odd hours of the night. So since I had major surgery and I am doing chemo again I think it is time for a refresher.<br />
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Just because I look "good" --fixed my hair, have makeup on, and not in pajama's, doesn't mean I am feeling good. Just because there is the class that says "Look Better, Feel Better" (this class is promoted by the makeup industry to those going thru cancer). I fix my hair and get dressed (currently only when leaving the house, I know many moms who are like that too!) because I don't want to look horrible even though I feel horrible. It takes a lot of energy out of me to do this and often involves planning days ahead to go out--one day get clothes out, another day bath, another day fix hair, and on the day I go out doing nothing but the outing to have energy for it.<br />
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Just because I haven't lost all my hair doesn't mean the chemo I am taking is not that bad or hard on me. Chemo is not just one chemo, their our MANY different types of chemo for each different kind of cancer. I, thankfully on this occasion, was born with very thick hair, so my chemo has me loosing about half of my hair. Now, while I know that it is better than having no hair, I still loose my hair all the time and quite annoying, clogging sinks, tubs, my bed, always picking off hairs.<br />
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Again, this goes back to different chemos. Just because you know someone who worked through chemo and ran a 5K doesn't mean I can or that I am lazy. Even the same chemo effects people differently. Plus, the surgery and the neuropathy induced from chemo makes it painful to walk, and I am always tired (one reason why I will be getting iron infusion for now on). And other issues I don't want to talk about.<br />
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For me, if you have an alternative, please feel free to post it, but if you want me to try it, please consider that I am unable to try all the different cures out there because of cost, unless you are going to buy it. I don't want to tell my kids that they can't do things and we need to eat bread and water (we already live off cheap meals) so I can try and sort through all the different cancer cures out there in hopes of finding one. I have researched many and it is overwhelming the different ones and then making sure you are getting the right supplements because not all supplements are created equally. It was also hard to find people with my specific cancer and the spread I have with a positive story. Example, the closest I found was a stage 1 (earliest stage) that *had surgery* and then did this alternative cure. Well, stage 1 doesn't get chemo or radiation for my cancer so the surgery was the treatment. I do believe there are alternative treatments, I just don't have the full ability to try them all until health insurance covers them. I think of Steve Jobs who had all the resources and couldn't find a treatment.<br />
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Even though this blog has been sort of sharing what I have gone through, it is no where near what I have gone through. I haven't post about 70% of the crap. So know it is worse than what you read. And this goes to anyone I talk to in person.<br />
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I felt really stupid as soon as I was dx with cancer. I kept thinking of a person I knew who had cancer. I wish I could have been different to this person but I couldn't then. I had no clue about it until I had it. And most likely you will not have a clue either even as I try and explain some of it. That is the *peace* you have when you do not have cancer. I wish I had the peace of not knowing. But having been on both sides it does make me understand and try to understand the non cancer person and where they are coming from.<br />
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For me, it is not the "stupid" comments that hurt so much as the not saying anything and pretending cancer is not there or that cancer would go away. I can not pretend it away or ignore it.<br />
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I wish I could be that gun ho cancer person that is often the poster person for cancer, I wonder if it is a myth of sorts or at least an omission of the whole truth and glossed over the bad parts.<br />
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And some more things to know that resonate with me taken from a list I read online:<br />
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“It’s okay to say or do the ‘wrong’ thing.” I did and do!<br />
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“I need to know you’re here for me, but if you can’t be, you can still show you care.”<br />
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“I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”<br />
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“I need you to listen to me and let me cry.”<br />
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“I need to feel hope, but telling me to think positively can make me feel worse.”<br />
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“I want you to respect my judgment and treatment decisions.”<br />
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“I want you to give me an opening to talk about cancer and then take my lead.”<br />
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“If you really want to help me, be specific about your offer, or just help without asking."<br />
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“I love being held in your thoughts or prayers.”<br />
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“Hearing platitudes or what’s good about cancer can minimize my feelings.”<br />
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“I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”<br />
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“Don’t take it personally if I don’t return your call or want to see you.”<br />
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“I am more grateful than I can say for your care, compassion, and support.”<br />
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“I don’t want to hear that I’ll be just fine.”<br />
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“I am unique, so please don’t compare me.” Said one survivor, “Don’t tell me how wonderful Lance Armstrong is, not letting cancer get him down’ . . . you don’t read about when he was down or puking or tired, and when you compare me to him or any other famous cancer survivor, I feel like I am less-than because chemo is kicking my butt.”<br />
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“The simplest gesture, like a text message every day or two, can mean the world to me.”<br />
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Visit—without expecting to be entertained.<br />
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Deliver meals (restaurant or homemade) or give food gift certificates.<br />
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Have their house cleaned, or clean it yourself.<br />
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Help with their children.<br />
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Reprinted with permission from Help Me Live, Revised and Expanded: 20 Things People with Cancer Want You to Know. Copyright © 2011 Lori Hope, Celestial Arts, an imprint of Ten Speed Press and the Crown Publishing Group, Berkeley, CA.<br />
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<br />Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-68781061854325045922014-09-07T16:00:00.000-05:002014-09-07T16:00:28.634-05:00I didn't want to writebecause it is too hard emotionally. But I want to write something about surgery before I start chemo.<br />
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Surgery was awful! Duh! My first post surgery memory waking up with a NG tube. That is the WORST thing EVER!!! I pray I never need another one. I cursed a nurse out over it. One nurse calmed me gently and kindly another nurse was mean and rude trying to calm me. So I think know which nurse I cursed out. After that was taken out I finally got sleep. I woke up the next day and the drs came to visit. They ask how I am doing and I say "Wow, surgery wasn't that bad and I am doing better than I thought I would be doing--emotionally and pain wise." Now here comes the "duh! you are so stupid" moment.----When finally after a week I start to think and realize it is the DRUGS that made me say that. The drugs now get lowered and lower it hits like a ton of bricks, this sucks and my brain can now THINK and SEE and FEEL what has happened to me. Oh the things I would have written if I had wrote every few days since surgery. I hate to even think about it, that is why I didn't write. I have been so low and I am trying with all I have to cope. My body and mind is so destroyed and broken and hurt, and hurting. My brain can hardly cope and process it, I cling to stupid games and busyness. Watched ALL six seasons of Reba the tv show. And now homeschooling diverts my attention, which I do from my bed. Laying down is still the most comfort I can have. Pain patches (3 at a time!) and pain pill is what I take to help, but still walking and moving causes pain and tiredness. I use a cane ( I refuse to use the walker the dr rx for me) that helps make me more steady. Being tired and having pain for so many weeks since surgery was in JUNE gets me so down. I will never feel health again it seems, especially since chemo is starting now. My hair is also falling out for the last few weeks and I haven't even started chemo yet.<br />
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Chemo starts Tuesday and will last 6-7 mths. I will get the chemo pump again that I will have attached to me for 3 days. I had surgery to put the chemo port back in again. I had a ct scan Thursday and I am very anxious to get the results. My surgery in June got clear margins (the best result you could get).<br />
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I had someone say "Oh that won't be any big deal. That will be easy, no problem." when commenting on something that I should be able to do. I didn't know what to say, I just held back the tears, and wanted to say "Yeah, easy for the normal person, but super hard for me and it will likely cause me to freak out." I didn't say that to them because would they even understand how a simple task for them could cause such pain and stress for me?<br />
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I so don't feel like writing. It just sucks to think. It makes me cry.<br />
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PS If anyone wants me to do ALL the MANY, MANY, MANY the alternative cures for cancer I will be more than happy to take your donations for it since my insurance doesn't cover it. And please tell me which of the many, many, many alternative cures for cancer will kill my cancer.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com3tag:blogger.com,1999:blog-1553432357637039372.post-6684177429787694012014-06-10T23:20:00.001-05:002014-06-10T23:20:38.991-05:00Last dayLast day of me. The appts have been very hard. I am exhausted in all ways. I am scared. I miss my kids. I want to live. I am overwhelmed and worried about my future. Too drained to write anymore.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com5tag:blogger.com,1999:blog-1553432357637039372.post-23760909358223800492014-06-09T18:02:00.000-05:002014-06-09T18:02:11.298-05:00Reality is worse than my imaginationReality is worse than my imagination. <div>
Yep, I am falling off the cliff. </div>
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-74449682959654416272014-06-07T23:29:00.002-05:002014-06-07T23:29:43.754-05:00I can see the light at the end of the tunnel.......and it is a train. LOL That is so true for me! I can't see a good end in sight, only a train heading straight for me and ready to hit and run me down.<br />
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Blah, blah, blah, yada, yada, yada. Just the same old things going on with me and same freak outs more often.<br />
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On Wednesday I took my youngest son (age 4) to the ER for what turned out to be an appendicitis! Just another thing to deal with and be strong right before I am about to leave for my hellish operation. It took another big junk of strength and adrenaline out of me to hold back the tears and freak outs and be there for my son which I did do but I am yet again weaker and still have to keep going.<br />
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I have tried to get ready for being gone for so long, so long away from my kids. I cleaned the house and paid the bills up to June 27. Took pictures of all of them. I so hope I don't die, I have felt like I would if I did surgery. I hope I am wrong. I am not prepared to die. I never got to write my "books" to my kids. I just want to be here with them and not write all these things I want to tell them in a book.<br />
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I still can't imagine myself walking out my door and going to Mayo. How will I leave my kids knowing I might not come back. and what does come back will be a me that is worse than I am now. I will be more tired than I am now, in more pain than I have now, a worse body than I have now, I worse mind than I have now, and less strength than I have now. And no guarantee (or even good odds!) that the cancer is gone and not somewhere else in my body and won't come back.<br />
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<br />Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com0tag:blogger.com,1999:blog-1553432357637039372.post-78672311892530054532014-05-17T00:27:00.000-05:002014-05-17T00:27:24.451-05:004 Years Ago<div>
Four years ago I was fine, I had no clue I had cancer. I had no idea what
it meant to have cancer or what hell it really was and how messed up it made a
life and for those around the person with cancer. I still can't believe I am a person with cancer! I sometimes feel like it must be some horrible mistake. </div>
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I couldn't believe it has been more than a month since I last wrote on here. I think it is good for those who read it that I didn't post. My mind has been horrible. I am at times barely hanging on. Many freak outs a day. The worst is when driving my son 6 days a week, when I am in the car driving for 2 hours. All you can do during that time is think. I try to sing stupid silly songs to distract me, but it doesn't help that much anymore. Some of the things that keep replaying in my mind is :</div>
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I am going to be in more pain that I am now. </div>
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I am going to be more tired that I am now. </div>
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I am going to have more bathroom issues than I do now.</div>
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I will have to deal with so so much more and learn so may new things that I don't want to. </div>
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I will hate my body more that I hate it now.</div>
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I will be a worse mom than I am now. </div>
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I am afraid I might die in surgery or soon after. I am not prepared to die. I don't want to prepare to die! </div>
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In medical news: After the exam surgery they determined radiation wouldn't be helpful. So the plan now is surgery, the exact same surgery from the first time around. Then 6 months of chemo. I back up to Mayo June 8 and will be there for who knows how long. Chemo wouldn't start for 6-8 wks after that, if everything goes perfectly. </div>
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Again, I am amazed how the medical community treats patients at times. Please tell me what kind of breastfeeding counselor I would be if I told moms any of these things:</div>
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I am going to give you tough love to help move you along in breastfeeding your baby.</div>
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I am going to take before and after pictures of your breasts. (notice, I didn't ask you if I could take them)</div>
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No, you won't need any in person help for breastfeeding, after you leave the hospital, even though you have never breastfed before and your in pain and even though you still don't know how to do it correctly, you'll just get the hang of it.</div>
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What? You you think you might have postpartum depression?? Well, you should be grateful you have a healthy baby and you are alive. Try to think positive and not be so sad, upset about things. </div>
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This is the kinds of things said to me in regards to cancer. </div>
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We are going to give you tough love to help move you along after surgery.</div>
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We will take before and after pictures. (wasn't asked, but told)</div>
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No, you don't need a visiting nurse when you go home. Yes, you will have drains for a couple of weeks, an open wound, and you will learn how to care for an ostomy after a short visit from the special nurse on how to do it.</div>
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You're depressed now? You think you will be more depressed after surgery? Well, you will be alive and we are taking out the cancer so you should think positive and cope better and really try not to be so upset. </div>
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Being a first time mom is a life changing event. My surgery is a life changing event. But I see no understanding of that. Having a baby is a joyful thing even though it can be tough, overwhelming and for some moms they get postpartum depression. And yet I have cancer which is not a joyful thing and the expectations is so different.</div>
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Remember, there is a disclaimer at the top of this blog warning that this will not be nice reading and I am not even telling everything or the nitty gritty details. </div>
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com2tag:blogger.com,1999:blog-1553432357637039372.post-35555819544976786892014-04-12T03:50:00.000-05:002014-04-12T03:50:39.678-05:00F.Y.I.I am not strong. <br />
I am not that other person you know that had cancer.<br />
I am not you, if you had cancer. <br />
I will grieve most everything that I have lost and what I will lose.(*see below for analogy) <br />
I will grieve often.<br />
I want to keep the life I want and have for as long as I can because soon I will not be able to do what I want and will lose it. <br />
I am having a very hard time accepting how things are and how they will become. <br />
I realize I can not be around people because I can not be this ideal cancer person and I have encountered that it is too hard for people to comprehend all that I have just written. <br />
I hope I do not lose those that can understand all that I have written just now. <br />
I am trying the best I can to cope. <br />
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Mayo was hell week. Exam "surgery" next week. Then 3 wks radiation, then surgery, then they'll see about chemo. Radiation done at Mayo. Hope Lodge free stay??? Nope, you get on the waiting list on your first day of rad. treatment and usually a 1-2 wk wait list so I would have to plan on my own hotel stay. Basically they said rad and surgery or nothing. Oh maybe some chemo that won't do anything then you will die a painful death, you must have surgery. So basically I have to figure it all out. And figure a way to be strong in the mist of every part of my life falling apart.<br />
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* You have your own car, you drive yourself wherever, whenever, and however you want to drive. Then one day someone says you can't have your car anymore. But they will drive you around but it is wherever they want, whenever they want, and however they want to drive. And then they say don't be sad, don't be upset, don't tell them how to drive, where to drive or when to drive, just be happy that you are getting help driving you around. Yes, you are grateful BUT can you not be sad, upset, cry and grieve that it is completely different and it will never be like it was. And can't you want to try and drive yourself for as long as you can until you know it must all change? THAT is what is happening to me in every area of my life, I am crying, upset, sad, mad, grieving everything. <br />
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com6tag:blogger.com,1999:blog-1553432357637039372.post-50926959420424547242014-04-05T20:42:00.001-05:002014-04-05T20:42:37.214-05:00Not one little good thingI have been a mess. I am physically and mentally exhausted. I can barely cope. I thought the first time around was hard, but the second time is worse.<br />
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Moving was a nightmare physically and emotionally. Mayo changed my appt from 2 days to 5 days of hellish tests that will have me sick and not eating and crying and freaking out. Then I have to make decisions. I could so soon be having surgery. I can't wrap my head around it, being in the hospital so long, being in pain, the changes, the possibility of dying in or because of surgery.<br />
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What was supposed to be a joy and happy moment of hope was gone. My son is devastated. I can't help but wonder if my cancer crap effected him. It seemed like nothing can go right. Why couldn't God just give my son happiness in the mist of all of this. It was supposed to be a moment that would (rightly or wrongly of me) bring happiness to get me through the week. I call next week hell week.<br />
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I so wish I could just go and crawl up and go to sleep. I can't deal anymore. It is harder and harder to pull myself up and do what I am supposed to do. My break downs happen more frequently, too many to count in one day.<br />
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My sister keeps asking me what time we are leaving for Mayo tomorrow. I can't answer, it will take all I have to get in the car and go there.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-86456747636592095692014-03-19T00:10:00.000-05:002014-03-19T00:10:57.273-05:00Only 100 yearsPumpkin who just turned 10 years old was listening to music in the car with me and the song 100 years came on and he said "We only have a 100 years to live ?!?!" He said it like he couldn't believe it and how short that was. We really don't think about how short life is. 100 years is short compared to the long history of things. I again start my bargaining, how much time do I need???? I REALLY REALLY want 20 more years. I think that would be just enough to feel ok about dying. My youngest would be 24, out of college and into the world and my daughter would be 28 and perhaps I would be lucky enough to see her become a mother and be there to help her. I so want to be there for her. It breaks my heart to not be there for her when she becomes a mom for the first time. I think I may ask the doctors can they get me 20 years, it's not like I am asking for 60 more years to get to that 100 years.<br />
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It has been total upheaval around here. What was supposed to be a great, relaxing slow move into our new house has turned into a ticking time bomb of hurry up and move because who knows what will happen and when it will happen. I feel so stressed about the move now. I had wanted to take my time and organize and clean things out etc but now I feel like I have to be quick just to get it done. I start to feel overwhelmed and cry and get mad.<br />
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I called Mayo in Minnesota and sent my info up there, they will be calling back by the end of the week to set up an appt. I am getting tested to see what my mutation is, that will tell them more about my prognosis and what chemo is correct to use. I am so scared of that appt. I am scared of surgery, so scared I will die during it or soon after it from complication. The thing is it will be considered "good" if they say I can have surgery. Also, I am having flash back thoughts of chemo---the port, the surgery to put the port in, all the awful chemo symptoms. While cleaning I found my chemo pouch/bag that I had to carry around ALL THE TIME for DAYS. I kept it, I didn't throw it away.Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-68554662772323799292014-03-13T23:09:00.000-05:002014-03-13T23:09:04.298-05:00I'll be back (imagine Arnold Schwarzenegger voice)<div>
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And so it is... cancer is back. I knew it would be back, just didn't know
when. So despite having a clear ct scan and good blood work it is back says the
GI dr who did the scope. And just like the first time they knew it right off, no
need to wait for the biopsy. It seems it is a little bit higher than the last
tumor. I guess the radiation killed the one spot so it grew some where else. At
least I got 3 years of remission. </div>
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The worst will be telling my kids, AGAIN, their mom has cancer. I will do
my best to play it off as no big deal. I am glad I never told my kids I was
cured and that mom was all better. It will make it easier I think than if I had
said "I was all better", "I'm cured". I think it will be less of a shock. I
think for me too, since I knew and know how bad cancer is and I never let
myself go to la la land fairytale dreams. I am realistic. I haven't told them
yet, that will be tomorrow. My plan is to have pizza waiting for them to eat
after I tell them. I thought about a movie theater right after I tell them, but
of course their dad said no, too much money to do that. I had just wanted them
to have fun right after bad news. </div>
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The second worst is telling my best friend. I so hate having her go through
this. I hate that I need her so much. I don't want to drain her. Life is hard
enough she doesn't need this too.</div>
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I hate that I have to be even stronger than I have been. I barely survived
mentally the last years, I can't imagine how I will be able to do it again
without completely breaking down. I can't handle anymore, I don't want to handle
anymore. </div>
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A tip for people, don't go on facebook and insinuate someone else has
cancer, if the person who has cancer wants the world to know they would do it or
tell you to post it all over facebook and if they didn't tell you could and you
didn't ask, then don't do it. <br />
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The next few days........................<br />
Are CRAZY! Took sleeping pills so I could sleep or my mind would not rest and I panic in the middle of the night when all is quiet.<br />
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Told the kids, the pizza worked! My daughter cried. I was strong. We went back to Gilda's Club (cancer group). It was great for the kids to have fun there.<br />
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I have a plan for now. At first and at other times I SO WISH I could just bury my head and pretend all is fine with me. Just like last time, how can I have cancer????? It makes no sense! When I feel "fine" except for the symptoms that I have are chemo and radiation related! And so being tired was my other sign. Crazy! Ok, the plan is to go see the local Onc Dr. to get his opinion and say good bye (insurance related). Call and get appt at Mayo Clinic in MN rated #1 in GI cancers!<br />
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What else is going on? We are also set to move this weekend to a better and cheaper place to live. (planned before cancer came back) The kids will be changing schools too. So much for them to deal with on top of the cancer thing. I so just want to put cancer on hold till I move in and unpack and get settled. How long can I go before doing treatment? Will the cancer please not grow till I can get things done? Pretty please!<br />
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The bright spot is I have an awesome best friend and another great friend who is also a dr. A BIG plus who will go to the Mayo dr appt with me. They have given me so much relief in dealing with this.<br />
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Right now I only have to modes: 1- complete melt down mode or 2- research brain mode<br />
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This post was written in brain mode because I am sure there will be plenty of complete melt down posts.<br />
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Please pray for me and my kids.<br />
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com4tag:blogger.com,1999:blog-1553432357637039372.post-67036732576160207182014-03-07T18:14:00.000-06:002014-03-07T18:14:15.111-06:00MarchIt's March, colon cancer month! Have you seen all the BLUE everywhere--on every product, a blue shelf in every store, have you read all the articles on colon cancer, have you heard about all the celebrities raising money for colon cancer? No?? Me either. <br />
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The ct scan and blood work came back normal! But I still have to go get the scope done next Monday so they can do a biopsy. I am nervous. I get more nervous the further out I get from treatment because my odds go up that it will come back. Can I make it till May when I will hit the 4 yr mark since dx?<br />
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Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com0tag:blogger.com,1999:blog-1553432357637039372.post-24530641615344427912014-02-18T17:28:00.001-06:002014-02-18T17:28:36.898-06:00The Power of a PigI just realized I haven't posted since November. It is easier to not post sometimes and ignore things. Liver has been up still. Just decided to not get ct scan until my regular one since it wasn't that high above normal. Had my scan and blood work will go tomorrow for results. I have been cranky with worry. For the last month I have been super tired, reminds me right before I got dx I was always tired but just thought because I had a new baby. I have also had some other issues no one wants to hear about. I don't want to do another scope, I was so sick the last time. Can't the blood and ct just tell me if it is back or not???
During all of this mental crazies I have been having, our guinea pig died. I am a huge animal person no matter before this. But going through his illness and death hit me more so because of my situation. Chewy was not old, he was sick, we took such care of him and saw him seem to get better. When he turned worse literally overnight I called vet and of course they recommend putting him down. We had already knew there was nothing else we could do to make hime better. The vet that works with guinea pigs wouldn't be in for a another couple of hours so I just held him and he died in my arms a few hours later and before we took him to the vet appt. it seemed to hurt knowing he died before his time of something and not old age. It sucked thinking of putting him down. I am so glad we didn't. It was super hard watching my kids go through this,him being sick and his death. It of course made think of how they would be once I die. So that little pig was pretty powerful at getting me thinking. I want to be cared for, i want hope (chewy did better and lived longer than they thought and his last weeks were special and important to me and the kids), I don't want to be "put down", I want love when I am dying.
So hoping all is well tomorrow with the scan and the blood work and that my other symptoms can just be blamed on the radiation damage. Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com3tag:blogger.com,1999:blog-1553432357637039372.post-29347412629214502692013-11-01T23:25:00.002-05:002013-11-01T23:25:28.486-05:00Just more testsI 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. Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com5tag:blogger.com,1999:blog-1553432357637039372.post-73214701440091117232013-10-20T23:41:00.001-05:002013-10-20T23:41:53.316-05:00Just another vent and whine, so sorry, feel free to skipAm 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. Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com0tag:blogger.com,1999:blog-1553432357637039372.post-89916941519169126372013-07-26T23:02:00.000-05:002013-07-26T23:02:27.718-05:00The Cancer CrabWow. 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.
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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. Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-55565261451933311072013-07-01T17:17:00.000-05:002013-07-01T17:17:47.398-05:00All They Will Ever KnowHaving 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.
Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com1tag:blogger.com,1999:blog-1553432357637039372.post-89434941339427812292013-05-26T20:17:00.000-05:002013-05-26T20:17:08.506-05:00Made it 3 years!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. Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com0tag:blogger.com,1999:blog-1553432357637039372.post-74461433412565866292013-04-02T18:14:00.000-05:002013-04-02T18:14:42.557-05:00UpdatesI'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.
Mehttp://www.blogger.com/profile/09054575139455992304noreply@blogger.com2