Tuesday, December 16, 2014


I 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.

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.

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
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.

Thursday, September 25, 2014

What to know about me

I 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.

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.

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.

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.

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.

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.

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.

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.

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.

And some more things to know that resonate with me taken from a list I read online:

“It’s okay to say or do the ‘wrong’ thing.” I did and do!

“I need to know you’re here for me, but if you can’t be, you can still show you care.”

“I am terrified and need to know you’ll forgive me if I snap at you or bite your head off.”

“I need you to listen to me and let me cry.”

“I need to feel hope, but telling me to think positively can make me feel worse.”

“I want you to respect my judgment and treatment decisions.”

“I want you to give me an opening to talk about cancer and then take my lead.”

“If you really want to help me, be specific about your offer, or just help without asking."

“I love being held in your thoughts or prayers.”

“Hearing platitudes or what’s good about cancer can minimize my feelings.”

“I don’t know why I got cancer, and hearing your theory may add grave insult to injury.”

“Don’t take it personally if I don’t return your call or want to see you.”

“I am more grateful than I can say for your care, compassion, and support.”

“I don’t want to hear that I’ll be just fine.”

“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.”

“The simplest gesture, like a text message every day or two, can mean the world to me.”

Visit—without expecting to be entertained.

Deliver meals (restaurant or homemade) or give food gift certificates.

Have their house cleaned, or clean it yourself.

Help with their children.

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.

Sunday, September 7, 2014

I didn't want to write

because it is too hard emotionally. But I want to write something about surgery before I start chemo.

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.

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).

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?

I so don't feel like writing. It just sucks to think. It makes me cry.

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.

Tuesday, June 10, 2014

Last day

Last 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.

Monday, June 9, 2014

Reality is worse than my imagination

Reality is worse than my imagination. 
Yep, I am falling off the cliff. 

Saturday, June 7, 2014

I 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.

Blah, blah, blah, yada, yada, yada. Just the same old things going on with me and same freak outs more often.

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.

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.

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.

Saturday, May 17, 2014

4 Years Ago

 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. 

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 :
I am going to be in more pain that I am now. 
I am going to be more tired that I am now. 
I am going to have more bathroom issues than I do now.
I will have to deal with so so much more and learn so may new things that I don't want to. 
I will hate my body more that I hate it now.
I will be a worse mom than I am now. 
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!  

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. 

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:
I am going to give you tough love to help move you along in breastfeeding your baby.
I am going to take before and after pictures of your breasts. (notice, I didn't ask you if I could take them)
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.
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. 

This is the kinds of things said to me in regards to cancer. 
We are going to give you tough love to help move you along after surgery.
We will take before and after pictures. (wasn't asked, but told)
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.
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. 

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.

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. 

Saturday, April 12, 2014


I am not strong.
I am not that other person you know that had cancer.
I am not you, if you had cancer.
I will grieve most everything that I have lost and what I will lose.(*see below for analogy)
I will grieve often.
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.
I am having a very hard time accepting how things are and how they will become.
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.
I hope I do not lose those that can understand all that I have written just now.
I am trying the best I can to cope.

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.

* 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.

Saturday, April 5, 2014

Not one little good thing

I 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.

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.

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.

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.

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.

Wednesday, March 19, 2014

Only 100 years

Pumpkin 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.

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.

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.

Thursday, March 13, 2014

I'll be back (imagine Arnold Schwarzenegger voice)

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.
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.
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.
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.
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.

The next few days........................
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.

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.

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!

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!

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.

Right now I only have to modes: 1- complete melt down mode or 2- research brain mode

This post was written in brain mode because I am sure there will be plenty of complete melt down posts.

Please pray for me and my kids.

Friday, March 7, 2014


It'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.

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?

Tuesday, February 18, 2014

The Power of a Pig

I 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.