What is LARS?

"What is LARS?"

One day I was scrolling through my Facebook feed and I saw posted on Fight CRC, which is short for Fight Colorectal Cancer and is an organization that does the Undy Run among other things, an article titled "What is LARS" and I thought to myself, um... what is LARS? 

Let me back up 

For the last three years, since my resection surgery in 2015, I have talked to probably half of a dozen doctors about my bathroom problems. Doctors at the cancer center, my surgeon who performed my surgeries, a naturopath, my primary care physician, two gastro docs and on and on. I have done COUNTLESS online searches trying to figure out what my problem is. IBS? A gluten sensitivity? A lactose issue? Candida overgrowth? SIBO? But none of these searches lead to an answer. Sure I had little bits and pieces of each and every one of those possibilities but none of them really explained why I was still spending hours in the bathroom and sometimes doubled over with stomach pain. I had even asked my gastro doc a year ago, with tears in my eyes "It's been two years, is this the best it is going to get? Should I just be happy that I'm alive even though my quality of life is less than ideal?"  I think he told me to try probiotics (which I was already on) and kind of shrugged his shoulders. He didn't know how to help me. No one did. 

So I felt like, gosh, if this cancer gastro doctor doesn't even know what is wrong with me, who will? I felt really alone. And like although I won the "You get to live your life" lotto I felt like I lost the "but not with a normal functioning body" caveat. I was going to have good days and bad days and there wasn't much more I could do about it. There are things that are 100% not possible anymore. And that's just the way it's going to be and that's all there is to it. I had tried all sorts of things as I was guessing at what could help but they all just seemed to make my problems worse, not better. 

Fast forward to January 16, 2018. And the article. 

https://fightcolorectalcancer.org/blog/what-is-lars/

As I read the article, I started to freak out. I mean, seriously freak out! I had EVERY SINGLE SYMPTOM it mentioned. 

The symptoms of LARS are different for everyone, but could include:

• Frequency or urgency of stools, largely due to the fact you have less space to store stool after removing part of the rectum
• Clustering of stools (many bowel movements during a few hours)
• Fecal incontinence (lack of control over bowel movements)
• Constipation for more than a few days, followed by multiple bowel movements a few days later
• Increased gas
• Abdominal pain

What?! So wait.... I'm normal?!?!

I've since found out that 80-90% of survivors who have a surgery similar to mine will have some degree of LARS. 

I've since joined a support group on Facebook and learned SO SO MUCH from people JUST LIKE ME!! 

I've since met with that same gastro doc who told me that a normal rectum is 20-22 centimeters long. I am on the petite size so I probably had a 20 cm rectum. I had 16 cm removed because of the tumor. Which leaves me with a grand total of 4 cm of rectum to store my waste. No wonder I'm in the bathroom a dozen times a day. No wonder!! 

On the "How Severe is your LARS" test I got a 41... out of 42. Which means I have what is considered 'Major LARS'
I've since had a renewed hope and optimism that I can figure this all out.

The great majority of medical professionals have never heard of this because we are the guinea pigs. Years ago, if someone had a low lying rectal tumor, their only option was a permanent colostomy bag. With medical advances, there are now more options and bowel function can sometimes be saved. But when you interrupt the communication between the colon and the rectum (are you loving all this butt talk?!) then you have problems. Not even to mention the complications from radiation. And doctors are just now starting to figure out that there are pretty significant quality of life issues involved. Some LARS sufferers can even quality for permanent disability due to the complications and issues that make working outside of the home nearly impossible.  Some even choose to go back to the bag because they can't take it anymore.

Look, I hated that bag. I hated it more than words can say. It messed with me in more ways than I could ever even attempt to express. But to be completely honest there have been times when I have considered going back to it. It's been rough friends. 

There is no magical treatment. No pill I can take. It's not just simply not eating a certain food and now I'll be fine. Although diet does help I'm figuring it out day by day. I still have bad days. I still have days where I'm curled up in a fetal position in my bed with a heating pad. Or days that I spend way more time in the powder room than I would like. But it's one more piece to my crazy little puzzle I've got going on and after three LONG years I am incredibly happy to have found an answer.

There was a discussion this past weekend on the support group Facebook page and someone asked me how I'm doing. After going through a variety of things that have worked or not worked for me I said the following :

" I feel like knowing about LARS - knowing that this thing that has dominated every moment of my life since my reversal 3 years ago - knowing it is real and there are people that get it and that there are things that can help, I have a new lease on life. I’m just so happy to still be here, you know? I’m figuring out my tricky broken body, but I’m still here. How amazing is that?!" 

Mastectomy

I was nine years old when my father's mother died of breast cancer. I remember sitting at her funeral, on the front row, and every time I saw her picture I would cry. Mostly because I was so sad that I would never get to know her. I also remember hearing from the many women whom she had helped. She had started a shelter for victims of domestic violence, a problem she understood personally as she was a victim herself. These women cried and praised my grandmother for all that she had done for them, she had saved their lives. In the end cancer killed her. I think it was at that time, and because of that experience, that I was sure that I too one day would get cancer. I just always assumed it would be breast cancer. Imagine my surprise when it turned out to be butt cancer!

I have gone back-and-forth at least 5000 times with the question of what do I do with the knowledge I have that I have an increased risk for breast cancer. My risk keeps going higher and higher with each passing year, with more and more research pouring in with regards to my specific genetic flaw, it now stands at up to a 48% chance. So everyday is basically a coin flip of whether or not I will get breast cancer.

I didn't get a choice the first time around. I didn't know that I had this genetic flaw, I didn't know that this ran in our family. Had I known, oh my, how my choices would have been different. It makes my head spin to think about that. But with this, I know. I know. So I am taking my future in my hands and tomorrow I will be having a prophylactic mastectomy with reconstruction.

I am an open book so of course most people who are close to me know that this is happening. Some have joked that I am so lucky that I get to get a boob job and have my insurance pay for it. That is not the way I see this. It is actually quite difficult for me. It is very sad for me. This is very difficult. It is very hard to sign myself up for a whole crap load of pain. The first time around, I had no choice. I had to get the tumor out of my body. But this, this is my choice. And it's really hard to make. I don't feel lucky. I feel sad. I feel stressed. Worried. Concerned about all the complications that could happen. Problems. Infections. I will have no feeling - all the nerves are cut. I have been researching this for a year now. I have seen pictures and read detailed accounts of every single possible problem you could possibly imagine. I am nothing short of terrified. I don't want to do this. And I have told every doctor that I have met that I don't want to do this. I would have never in my life found myself in a plastic surgeon's office under any other circumstances. There is no judgment from me for people that do find themselves in those offices, but as for me that just would not have been something that I would voluntarily do. I like my body. I am sad that it will never be the same again. The changes are permanent. It is not an upgrade.

You cannot change my mind about this. Because I have seen more than you have seen, and I know more than you know, and that's all there is to it.

With all that being said, I know I am supposed to do this. I know that without question. The fact that I so strongly don't want to do this, yet know I have to, makes me frightened to think about what would happen if I didn't. I have spent countless hours of contemplation, study, and prayer weighing this decision and I know it is something I have to do.

I really struggled with trying to figure out what I was supposed to say to my kids. How do I explain to them that I am cutting out all of my breast tissue. How can I make them understand without scaring them. We gave a very generic explanation of what was happening and warned them that I was going to be limited and hurting for a little while. But that I was doing this just to be sure that the cancer didn't come back.

A couple days after we had this conversation, Ethan was sitting with me on the couch. His head was in my lap and I was playing with his hair.

"Mom, what kind of cancer would you get if you don't have this surgery?"
"Breast cancer," I replied
"Does that kind of cancer kill people?"

Up until this point, I didn't know if my kids knew that people died from cancer. It was never anything they brought up when I was sick and it was never anything that I had the heart to tell them. Besides, I really didn't want them thinking about me dying.

"Yes you can die from that kind of cancer," I said.
"Mom, will you please do that surgery? Please please do it mom. I know it's going to be hard but please do it."

I want to raise my kids. I want to live a nice long life. I want my kids to grow up without having to wonder about cancer killing their mother. I will go through anything and do everything I can. Even if it scares me. Even if I really don't want to.

A few years ago there was a woman in our ward that was diagnosed with breast cancer. I still remember vividly the first time she came to church after her mastectomy. I couldn't stop looking at her chest! I told myself to look away, I told myself I was being weird. But I just knew somehow, what she was experiencing was going to be in my future. I told myself I was being ridiculous. I told myself I was being a drama queen and a hypochondriac and every other thing you can think of. But I just somehow knew.

I'm grateful for technology and that because we know about the genetic link to cancer, that I get to do this before I get another cancer diagnosis. I'm grateful that the power is in my hands, and then I get to be strong enough to get to this horrible evil before it gets me.

We have a lot going on in our lives right now. We had a leak in our foundation, which caused nearly $40,000 worth of damage to our house. We are living in a temporary rental house and our house will not be done before my surgery is scheduled. I have thought over and over again about how I should just delay the surgery but I just don't feel right about that so we're moving forward and I'm trying my best to deal with all of the stress as best as I can. I really feel like our life has just been one roller coaster after another. For the last couple of years. I would love it to just kind of calm down for little bit, ha ha. But I'm just trying to throw my hands in the air and scream and laugh as we ride the ride and do the loop da loop and live through one wild adventure after another.

survivor's guilt

I had a dream last night.

I was sitting in the family room of my great grandmother's house.

I'm sure it wasn't actually her house. I have one really vague memory of visiting my great grandmother in Cottonwood. Her trailer was too small for us kids to all fit in, and we were much too loud for her patience level, so we went outside to play in the gravel backyard. I remember being bored out of my mind and resenting that I was sent outside. But then I spotted wind chimes and they were just so beautiful. But yeah, I'm positive it wasn't her actual family room. But that was what it felt like to me.

Seated around the room were warriors. Some who I have met in person, some who I only know from seeing posts about them on Facebook.

A mother whose 14 year old son was diagnosed with a devastatingly difficult brain cancer while she herself was fighting colorectal cancer for a second time. A young father who is losing his battle to testicular cancer and whose friends have started soliciting funds for his funeral. A father of three whose cancer was found in his hip but has recently returned and has now metastasized in his lungs. And my sweet friend whose mother was just diagnosed with ovarian cancer and is fighting the fight with all her might.

I just sat there and cried. Awed to be in the presence of such magnificent people, all unified by this devastating illness and by bodies that have betrayed us.

I felt awkward being there,

 I knew I didn't belong.

Their situations were so much more difficult, their suffering so extreme, their fights have come at such a high cost. The percentages are not in their favor. They are living my worst nightmare. As I sat there, tears streaming down my face, crying a loud, ugly, messy cry, I was ashamed for the times I cried out "Why me." I was ashamed for the times that I doubted and questioned and was angry about having cancer. I felt guilt in their presence, guilty for surviving. No words were spoken, no one condemned me. They sat there as I wept, as I said "I'm so sorry" over and over.

We had already found out that my genetic flaw is through my mother. We recently found out that it was passed to her by her father. His mother, my great grandmother with the gravel yard and windchimes, was diagnosed with rectal cancer at the age of 78. She had a permanent bag, which much have been terrifying to her since just a year or so before her diagnosis, her husband had passed away from his bag (necessary because of bladder cancer) which had gone septic and killed him. What that must have been like, to have on your body the very thing that killed your husband, I can't imagine. My great grandmother wasn't known to be very nice, but I have felt a closeness with her since learning of her condition. I wonder how many times she was there as I cursed that awful bag, as I cried over the pain of it and how disgusting it was. I wonder how many times she was right there saying "Preach" in my ear. And probably "Get over it wuss."

Even still, that bag is gone and just a scar remains. I am the lucky one. And now, here I am, a year removed from my big surgery, 8 months since my last chemo round, 7 months since the bag was taken off of me. I'm still here. CT scan clean. Clean labs. Clean breast MRI. I'm all good. I feel so incredibly blessed. But I weep, in my sleep and while awake, for those who are still in the trenches.

6 month scan

I'm feeling like a drama queen today. Everything I saw this morning on the news or anything I see on Facebook I just keep thinking "oh yeah?! Well I am at the hospital. I am at a cancer center.  I am getting my blood drawn and I am drinking the nasty vanilla milkshake and I am getting a ct scan I am finding out if the cancer is back."

Well that's good right? It's good that you are being monitored and that it has already been 6 months and that you will just have that reassurance that all is well.

Yes that is true.

I can't believe it has been 6 months since my last chemo round. Wild. And I am grateful to be on this side of the journey and not on the other side. As I was just getting into the elevator, one of the volunteers was giving a tour to a new patient. He showed him where the bell is and said "you get to ring that when you are done" and the poor man said "well that will be a pretty great day." I remember saying something similar but feeling like that day was never going to come. And then it did. And more days passed. And here we are.

As I walk these halls I see people in various stages of treatment. I recognize those at the very beginning of their walk through hell by their shell shocked faces and shiny eyes. My heart aches for them. I see those in the middle of the horror, their bodies ruined by the poison that is, hopefully, saving their lives. And then there is me. I'm done. I made it through. And amid the guilt of feeling so healthy around so many who are suffering, there is also anger. I'm freaking pissed that I am here at all.

I hate cancer. I hate it. I hate that I am now forever associated with it.

My mom had a scare. Because we are predisposed to breast and colorectal cancer, we have to have increased screening which includes rotating mammograms and MRI's every six months. Her MRI showed an area of concern.  Thanks to a series of frustrating circumstances, it was a month of agony waiting to know if she had cancer or not. I went with her to the appointment which was a wonderful blessing because I would have gone crazy waiting at home for the news. She is clear, with an area that they will watch but she is fine.

This is going to be her life and my life every 6 months for the rest of my life, unless I decide to chop em off.

That sounded like a very attractive and obvious choice. Until I started looking at post mastectomy pictures.

These women are butchering their bodies, enduring months, sometimes years of pain. Multiple surgeries. Infections. Problem after problem all in the name of saving themselves from what I have already lived through. And while I don't blame them, I am hesitant to join them.

I won't know the results from my scan until tomorrow. I have known only a handful of colorectal cancer fighters and the cancer has come back for every single one of them by their first scan. So I am a little stressed.  And pissed.  I'm just pissed.  I'm sorry that I am that way today. I'm not inspiring or brave today. I hate this place.  I hate cancer. I keep waiting to get to the acceptance phase of all of this but I don't know if I ever will. 

6 months means a lot of things. It means I have this scan today. And a follow up with my doctor tomorrow where we will review the results. In a few weeks I will have a colonoscopy to check that everything is looking good in that department. And a week or so after that I will have my first breast MRI which is a more in depth look than the mammogram I had 6 months ago. I will have to tell my doctors that I am still on hormone replacement, which they recommended I stop taking. Last time they told me that, I was resolute in my decision to have a mastectomy so I figured why suffer for breasts that are coming off anyway. But now I'm not so sure, and it's going to make for an interesting discussion. Which brings me back to being pissed. 

I'm 32. Somewhere in the midst of all these tests, I will have my 33rd birthday. I resent the fact that I have to be discussing and fighting for hormone replacement. It is replacing less than what my ovaries would have been producing on their own. And had I somehow been able to keep my ovaries, the doctors would not have recommended ovarian removal because my percentages are low, in comparison to other genetic mutations like BRCA. So if they wouldn't have recommended ovarian removal, and if I'm on the lowest dose possible for replacement, and if I'm replacing less than I would have already had in my body - WHY do I have to stop taking it? Ugh, we just go round and round the merry go round and I never wanted to be on this ride in the first place. 

All day today I have been thinking "What do you do on the day before you find out you have stage 4 cancer and a 7% survival chance." 

How horribly morbid is that thought?

I don't think the cancer is back. But I really don't know. And if it's back, I'm automatically considered stage 4. I could have cancer in my brain, or my lungs, or my breasts, but it would still be considered colon cancer because that is where is originated. How much does that suck?! Haha! I have butt cancer in my boobs, thanks. Um, yeah, that is just not cool. Haha. 

All sorts of thoughts swirl around and I resent them all. I don't want to have any of them. I want my carefree, relatively worry free life back. But I never will. Once I'm past the 5 year time, when the cancer is most likely to come back if it's going to come back, by then it will nearly be time to start worrying about testing my twins for the genetic flaw. And with that comes a whole bucket of concerns. It's just a lot. It's a lot people. I told you - I'm a drama queen today. 

I probably shouldn't write blog posts while I sit at the hospital waiting for my scan. This is a sad place. 

- * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * - * 

It's Tuesday night and my scans came back clear! No cancer and all is well. 

As we sat in the waiting room, Matt mentioned all the things that could have gone wrong but went right. All the things we were initially scared about but ended up working out just fine. The infections that didn't happen, the permanent bag that I avoided by a centimeter, the 6 inch vertical scar that didn't happen since I opted for laproscopic surgery. It was a good reminder, all the prayers that were answered, all the good that has happened, everything I have to be grateful for. 

6 months down. 

We asked my oncologist what the rate of recurrence is. He said, historically, about 40%. But in my case, since I had the more advanced protocol that has proven to have better success, it is likely around 30%. Give or take. But they don't really know, and won't really know, until they look back in 10-15 years at what is being done now and can see what worked and what didn't. 

"It is amazing to think about how different today could have gone" my husband just said to me. 

So very grateful that it went the way it did. 

xoxoxoxoxoxoxo

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.

surgery #2

 Today marks 4 weeks since I had surgery. I have tried to write this post multiple times and I don't really have an explanation for why it took so long. Have you all been on pins and needles waiting to hear from me?! Haha! I'm still sorting out how I feel about all of this and I think I just wanted to move past it all and forget it ever happened.

The morning of the surgery, as I walked to the car at 5 in the morning, I was surprised to find this

in my front lawn. So sweet!! It really made me feel so happy!

My husband took this picture while I was in recovery. Shouldn't there be rules against that?! Surgery went perfectly. I think it took less than an hour (I don't really know since I was knocked out) and I didn't have to have more incisions - the surgeon just pulled up my ileostomy loop, closed it up, then closed my incision site with three staples. I was up walking within a few hours. WAY easier than my first surgery. I was on the same hospital floor as last time and had a ton of the same nurses. I was SO EXCITED to see them again!! Nurses flippin rock. They are amazing. I was so happy to be at the end of all of this and be able to tell them the good news of no more cancer. 

This is me in the courtyard outside of the cafeteria the day after my surgery. I still couldn't eat anything other than liquids but I felt good enough to walk around. I was off the pain meds by the second day too. It really was so much easier than my last surgery. 

Matt was planning on only staying the first night, since we knew it was going to be a much easier surgery, but he ended up staying the whole time which made me happy. I feel so much more at peace when he is with me. Surgery was on Thursday and by Sunday afternoon I was back home. 

I came home to some beautiful surprises. 

The young women in my ward decorated my house with all these adorable hearts!! The messages were sweet, random and some of them were totally hilarious. One of my girls, Kayla, and her dad PLANTED ROSE BUSHES FOR ME!!!! 

I have wanted rose bushes since we were married 13+ years ago but I never got around to it. I finally googled it one day last year and found out the best time to plant rosebushes in Arizona is in March so I mentioned that to my girls at church. Well sweet Kayla remembered! We have loved these rosebushes, my kids check every day to see if we have more buds growing. 

Our first rose!

My mom, who watched my kids while we were at the hospital and deserves a medal or a major vacation somewhere tropical, made this sign and got me balloons. I was so happy to be home! 

The first few days after my surgery, I kept checking for my bag or thinking "Oh I have to empty my bag" and stuff like that. I was thrilled every time I realized - NO I DON'T!! There are still things that aren't 100% back to normal - my bowels were out of commission for nearly 6 months so it takes some time for them to start functioning normally again - but I am so close. 

Emotionally I am doing better but still kind of ... I don't know... weird. I just want to pretend like none of this ever happened. I have decided I don't want to have a party - the thought of it gives me anxiety and I just want to be normal. I want to be anonymous. I don't want any more attention. 

Don't misunderstand. I have so much appreciation for all of the service and kindness that has been shown to our family over the last year. I needed the love, support and prayers. I needed them more than I could ever put into words. But now that I'm better- I just want to live my life. I don't want to talk about cancer anymore. I almost feel like I am having to re-learn how to socialize appropriately - having to re-learn what to talk about now that cancer is done. 

This was the worst thing that has ever happened to me. 

I don't know what to say when people say nice things to me about how we've handled all of this. I want to argue. I want to tell them that I'm none of those things that they are saying. I'm not. This has been incredibly painful. So much suffering. But it could have been so much worse. People live through much more difficult situations with much more grace and patience. 

I have so much fear that it is going to come back. A few nights ago, Matt and I were watching a documentary about cancer and there was a 2 time cancer survivor that they were interviewing. She had had cancer 20 years before that and she said she is STILL scared it is going to come back. I guess it's something that I'm going to have to get used to, this fear. 

I had my first mammogram last Friday. Since my genetic predisposition is for colorectal and breast, I will be monitored extra close for the rest of my life. We found out that my insurance will cover a prophylactic double mastectomy if that is something that I want to do. I really really don't. But I REALLY REALLY don't want to have cancer again. And if I don't have the mastectomy, and I end up getting breast cancer, and heaven forbid dying from it, well, that would just be ridiculous. So we have some things to think about. 

Real life is tricky. Real life is hard. So much of real life was put on hold because of cancer, and now trying to get back into the swing of things - it's been interesting. I feel like I need to be an expert in all things cancer prevention related. It's a bit overwhelming. And the way I am - if I get super overwhelmed, rather than getting to work and figuring stuff out - I just do nothing. I'm paralyzed. It's not a good trait to have. I feel like I have so much to figure out, but then I get all like "Ugh! I don't want to think about cancer anymore! I don't want it to have any control over my life! I am DONE. Done thinking about it. Done talking about it. Done worrying about it. Just DONE. Get out of my head cancer! Get out of my life!!" And I do nothing. 

With all of that being said, I'm so happy to be on this side of this journey and not at the very beginning. I survived. I'm a survivor. Crazy, right? I never would have imagined this happening to me, but none of us get to pick our trials, we just hope to make it through them the best we can.  

Wishing for thousands of cancer free days 

scan results

I was so nervous. I had a cat scan on Monday and had to wait till Tuesday to find out if we were all clear. The doctor was running late and it was torture to wait. A few nurses and the pharmacist came in to wish me luck and say goodbye, it was really sweet. I could hardly carry on a conversation though, I was so nervous. I had to wait for forever but my scan IS CLEAR!!!! I guess I'm not technically considered cancer free, the way the oncologist phrased it was that they saw no signs of active cancer in my body. I thought for sure that I would cry for joy when I got the results but I just felt relief. We talked about prevention and diet. To be honest, the 'suggested' diet is pretty much how I eat now so it's not much of a change. We talked about what to expect- labs every 3 months and a scan once a year but my next scan will be in 6 months. I'll have to start getting mammograms now since I have an increased risk for breast cancer. A colonoscopy in 6 months. Lots of medical stuff in my future. But if it keeps the cancer away, I'm happy to comply.

We also talked of recurrence. It has weighed heavily on my mind since then, which is why this post is delayed a bit. I am also sick with a head cold which has put a damper on the celebration as well. Part of me can't believe this is all almost over. Cancer has taken over my life and changed nearly every aspect of my life and it feels just so good to almost be DONE with it. I almost can't believe that we're really here, at the end. So relieved, still a bit worried, but so happy to be at the end of this experience. Surgery is tomorrow and I am ECSTATIC!!!!!! Can't wait to get this bag off of me and to not be cancer girl anymore! One or two more prayers for me would be appreciated :) xoxoxoxoxoxo