a year ago today

A year ago today, around this time, I was slumped over in the passenger seat of my minivan in the parking lot of Trader Joe's. Matt had run inside to get a jar of biscoff for a church activity that was happening later that day. Through the haze, left over from the colonoscopy, I watched as cars drove all around me, people loading their groceries into their cars, going about their everyday business. It felt strange, watching these people act normally, when my life all of a sudden felt completely NOT normal. I had a tumor. In my rectum. It was very large. And it was likely cancer.

I still have moments like that. I looked at my stomach last night, tracing my fingers over all of my scars, and thought "I can't believe I had cancer." It is still just completely surreal sometimes.

"How are you doing?"

I get asked that all that time. And when I say "Great!" people always say "Really?" like they don't believe me.

I really do feel great. It is wonderful to feel great! I will never forget how awful I felt for months on end, and I will never again take for granted just how wonderful it is to feel well. Good health makes ALL the difference! I am not 100% . It is embarrassing to talk about (seriously, butt cancer HAS TO BE the most embarrassing one out there!) but there are still days that I am going to the bathroom 20-30 times in one day. There are times that I'm in the bathroom for an hour or two at a time. It limits what I can do, how far I can drive, the activities we can participate in, when I eat, what I eat, how much I eat, etc. But I used to have just one or two good days a week. Now I only have one or two bad days a week so there is definite improvement. My bathroom trips are because of the fact that a significant portion of my rectum was removed so my capacity to hold waste has decreased. Thankfully I don't have incontinence problems, which was a possibility. I have developed weird stomach problems that I have never had before and my only guess for that is that because my bowels were out of commission for nearly 6 months, while I had the bag, that my stomach is having a difficult time adjusting to the new normal. Even then, it's way better than it was before.

I have to constantly remind myself that my reversal was not even 3 months ago and that it usually takes  year or so before things are mostly back to normal. I'm not the most patient person and I struggle with just wanting to be 100% normal right this very second. But I will never be who I was before all of this because cancer has changed me.

I wrote a letter to myself (click HERE if you don't remember it or care to read it again) and I'm glad I got the chance to read it this morning. It's a good reminder - now that we are a week into summer break and my kids are already 'SO bored Mom!' and I'm counting down the hours every day until Matt walks in the door. But in that letter I wondered if once I was done with all of this, if the fear would haunt me.

We just finished up a marathon of doctors appointments, all discussing the pros and cons of a prophylactic double mastectomy and reconstruction. My insurance covers it since I have an increased chance of breast cancer because of the genetic flaw (CHEK2.) My risk is 20%. Much lower than other genetic flaws, which can be up to 90%. However, my colorectal risk was only 11% and I had that already. So although 20% sounds pretty low, it seems incredibly high to me. And to most people, it's a no brainer. Take the breasts and it lowers your chance as low as they can get it - which is 1%. Keep my breasts (whoa - I'm gonna get a ton of hits on this post, butts and breasts both mentioned. Move along you sick little puppies) and I will have either a mammogram or a breast MRI every 6 months for the rest of my life. This is in addition to the CT scan I will get every 6 months to check for any signs of cancer. Also, because estrogen fuels breast cancer, the doctors want me off the estrogen replacement which means that since I have had a complete hysterectomy, I would be in full blown, unmedicated menopause.

Well, I tried that. I tried going off the estrogen. I removed my patch last Sunday. Starting on Wednesday, I had a migraine every afternoon starting at about 2 p.m. This was last week - the first week of no school. I also had tons of hot flashes all day and all night - which led to night after restless night. After just a week - I couldn't handle it anymore. The migraines were so bad, with no end in sight, I just couldn't. My mom had horrible migraines for most of my teenage years, and it was heartbreaking. I just couldn't do that to my children. Or to Matt. Or, let's be honest, to myself.

They know that estrogen fuels breast cancer but they don't know how much. There is no percentage for that. So there is no way to know how much staying on estrogen will increase my chances. And since I've pretty much decided to do the mastectomy, I'm torturing myself for breasts that are gonna come off anyway. And if, somehow, cancer develops in my chest before next year (which is when I am likely going to have the surgery - my colorectal surgeon wanted me to give it a year to make sure everything in my colon was calm) then I would just have a mastectomy anyway. So what is the point of going off the estrogen? Just to torture myself? I had to give it a try - so I could tell the doctors that I tried. Haha, I might not tell them I only lasted a week.

My cancer was stage 3b. The 5 year survival rate for that stage is 71% (which is actually higher than when I was first diagnosed last year - the treatment for colorectal cancer is improving all the time. I remember seeing rates as low as 46% when I was first diagnosed.) So there is approximately at 29% chance of the cancer returning. If it returns, I am considered stage 4, and there is like a 7-8% survival rate.

I don't live in fear of it returning, but I do have fear. There are days that I actually don't really think about cancer. It doesn't bug me. Then there are days that I'm consumed with it and worried about every thing I do, every thing I eat, every thing I'm not doing ... it's just a lot to think about and process. I promised myself I wouldn't let it get to me like this, that I would enjoy every healthy day. And I'm trying to. I really am. And most days I do.

A year ago today, my whole world fell apart.

But because of my husband, my family, my friends, my church, my faith, your prayers - my world is whole again.

Last week, I cleaned out my room. It had been ignored for a year and was in need of some major attention. I went through every note, every gift, every memento that had been given to me, tears pouring down my face. Grateful isn't a big enough word. Neither is love.

I don't know how to adequately express my gratitude for all of the love and support that my family have received over this past year. My children still thank God in their prayers for you and for everyone who has helped us. They pray for your good health and pray that your prayers will be answered. I still pray for you and think of you often. I try to pay it forward and do what I can when I can to help those around me. I will never be able to repay it all but I will live the rest of my {hopefully very long} life trying.

I can't believe it's been a year. I can't believe that's all the time that has passed. It feels like 10. I am so thankful we made it through. Thankful to be a survivor and for all of those who stood beside me, supported me, loved me, laughed with me and who, at times, carried me through it all.