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.

Reality is worse than my imagination

Reality is worse than my imagination. 

Yep, I am falling off the cliff. 

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.

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. 

F.Y.I.

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.

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.

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.