I’ve been a HOT mess today. Sobbing every time I turn around. My head is pounding, my eyes are all crusty. I am having trouble dealing today.
When you have to sign a form saying basically we are only treating you to go into remission, not to cure, and that there is a risk of death by chemo….it’s just one more time, another punch to the gut and the wind gets knocked out of you as you realize the seriousness of everything.
I know people live long lives in remission, but it’s also one of those things that our lives will NEVER ever be the same. Every single time something comes up with him, that fear it is cancer is the first place our minds will go. And it’s extremely likely that he will get cancer again after this.
Cancer robs you of everything. Peace, sanity, health, finances, sleep, security. I haven’t been sleeping. I’ve developed GERD, I’m a fucking wreck all the time and I’m just trying to do my best, but fuck. It’s been one thing after another that has completely stolen every shred of any thought I had that life was good and we were going to be okay.
This is what I’ve looked like 95% of today. Yesterday sucked but today was apparently my day to process everything from yesterday. I feel like I’ve definitely been doing ok, like just trying to feel what I feel and move on, gotta walk through it can’t go around it, but today was bad.
Sean had his first CT after surgery, he had his port placed that they’ll use to give him chemo so it won’t be an iv in his arm that’ll blow his veins, this way it’ll go straight to his heart to pump through his system faster. Anyway then we had chemo class in the afternoon. That was overwhelming to say the least. Then you get a stack of papers that list the most common side effects of each of the chemo drugs he’ll be getting. Then they tell you don’t worry there are grants and programs to help you pay for all this but we’ll get to that later. Then they take you on a tour of the chemo treatment room where there’s just dozens of chairs with all the medical equipment lined up and patients receiving their treatment and they tell you to bring a blanket or your tablet or a book because you’ll spend hours and hours there each time you have to get treatment.
I didn’t have time to process any of this yesterday. But boy did it hit me today. Also I am pretty certain I’ve got some PTSD from caring for his mom at the end of her life from cancer. Because when people tell me “he’ll be ok, he’s gonna beat this” I just want to scream nothing is ever going to be ok again! I know how this ends. I know what this looks like when it comes for him again and again. I am just not ok today.
After the initial shock of a cancer diagnosis started to wear off, both of us got into this mindset of ok, let’s get this fixed, let’s schedule all the things and get this thing out of you and move on with life. All you hear from everyone once you start telling your friends and family is how “colon cancer is THE cancer to get if you have to get one” or “colon cancer is one of the most beatable cancers out there”, it’s absolutely well meaning, but in the back of your mind *at least in the back of MY mind*, I was thinking okay, honestly, that’s great and all but it’s still fucking cancer. It’s still scary as hell, and not everything is sunshine and rainbows and a walk in the damn park. Again, remember in a previous blog post I talked about the grieving process and how getting a diagnosis like this, you go through all those same steps, so clearly at this point I was in the anger phase. lol
Once we had the pathology back, we were able to meet with the oncologist, and she’s terrific, she has the right amount of bedside manner mixed with “I know how to fix this and I’ve got it” confidence. We left that appointment feeling better, armed with a little more information than before we went in, and a better idea of the steps needed to move things along.
Photo Credit: Hannah Thomas 2018
Next up was a CT to see exactly what was going on and where, if there was more than just the one tumor or if it had already started to spread outside of the colon. The hardest part of that was waiting for the results, once those came back, we were able to meet with the surgeon who would do the colon resection surgery. In meeting with him, I was confident in his ability but I just couldn’t wait to have it done, but wait we did. We saw the surgeon January 2nd and surgery was scheduled for February 5th. GAH! In my mind, all I could think was why in God’s name are we not moving forward to remove this disease before it has the chance to grow and spread!! It was frustrating to say the least. In the time we had to wait, there were more tests and insurance red tape to deal with…don’t even get me started on the insurance bullshit, another post for another time, perhaps.
One of the tests that needed to be done was a PET scan. If you are like me, you aren’t familiar with all these different types of tests and why you need them all or how they differ from each other…lucky for me, Sean has been in the medical field for over 20 years and knows all of this type of info and explained it in ways I could easily understand lol, that’s not to say I didn’t still get confused, but ya know…
Photo Credit: Hannah Thomas 2018
So, we went to get the PET scan. I sat in the waiting room for 2 hours while he went back and drank the dye, then waited, then did the scan. The next day they call and say – well, good news and bad news, good news is you are tumor free from your eyes to your belly. Bad news is they didn’t have you empty your bladder so we can’t see the area we are actually concerned about, so you need to repeat the scan. UGH! So a week later, we went back and repeated everything, but you better believe, he emptied his bladder first! A couple of days later, we got a call that the scan showed some areas that “lit up” from the dye aside from Pennywise, so there was talk about doing a biopsy before the surgery to see what was what with those areas. Eventually it was decided the biopsy wouldn’t be possible because of the location and how they’d have to get to it, so they’d just have to deal with it during surgery.
At this point, all the testing was done…we were just in the last few days before surgery and trying to prepare for all that was to come with it.
We celebrated our 14th wedding anniversary this week, we got married on Leap Day 2004, so while we technically didn’t have an anniversary this year it was more important this year than previous years to celebrate the in between’s.
At the time we got engaged, he was still living in Iowa and I was here, in Phoenix. He proposed Halloween weekend 2003 and we of course started talking wedding dates pretty soon after. Sean had a date in mind, pretty quickly and asked if I’d be okay with February 29th. Wow, that was fast! That would only give us a few short months to get him moved from the midwest back out to the valley, and plan a wedding, and get him a job, and find us an apartment…those are a lot of big things to make happen in a 4 month time frame. Once he told me his reason for wanting that date, I of course said I was fine with it.
See, Sean’s grandparents had gotten married on that date many years before and they’d celebrated 16 anniversaries but 64 years of wedded bliss. He figured if it worked for them, it would work for us. Plus, they’d both passed before we’d met and he wanted a way to include them in the special day. So, see, I really couldn’t have refused him that date and still claim to have a heart 😉
We started making the plans and doing the things, and ended up getting him moved back out here by Christmas. We moved into our apartment not long after the first of the year and then it was just a matter of the final touches on the wedding planning. Once the day finally arrived, it was beautiful. Blue skies and gorgeous weather, as we are accustomed to in the valley of the sun. We had an outdoor wedding and everything was really exactly as it should have been.
Now, here we are all those years later, never having thought we would have to deal with some of the things we’ve dealt with in our early years of marriage, like being caregivers for his mother as she passed from cancer. Or being a caregiver to my aging grandmother who was sliding further into Alzheimer’s and dealing with bipolar disorder at the same time. Or having an aunt and uncle of his pass from different types of cancers.
Once we started learning of the different types of cancers in his family history, I became more and more concerned that eventually this would enter our world…I mean, you cannot have so many people in your family with all different types of cancers and think you’ll be the one it doesn’t touch. It was a huge worry for me, I’m not sure if it was as big in his mind. I can tell you with certainty I never expected to get the dreaded cancer diagnosis as early in life as we got it though, I thought we’d have 20 more years before we’d hear it.
Now, as I sit here contemplating life and having celebrated this 14th year of marriage…I would be lying if I said there isn’t some level of fear….I hope and pray and I have to believe that he will be here to celebrate many more anniversaries with me, just like his grandparents had…I want my 64 years with him like he promised.
Once you hear that word…Cancer…it shifts something in you. It doesn’t compare, at all, but the only thing I can compare it to is when I found out I was pregnant. From the second I saw the two pink lines, everything in my world shifted. Priorities change. Things become more clear in your mind.
I have found myself walking a thin line between trying to be the optimistic, supportive cheerleader wife and trying to be grounded in reality and really think about what a cancer diagnosis means. The thing about Sean is he has been the eternal optimist and he KNOWS he will beat cancer, his strength through the first weeks and months of all this has been truly incredible. I felt like I was falling apart constantly, the littlest thing would set me off on a crying jag. Yet, at the same time, I believe he will beat this and I know he will be okay.
It’s a hard space to be in mentally, feeling emotionally fragile all the time but trying to keep the positive thoughts at the forefront. I struggle with anxiety and depression in normal day to day life, then you throw something life altering like cancer into the mix and there’s an even bigger chance of falling into a depression because things just seem so hopeless and you feel helpless. I’m someone who really likes to be in control, and fix things…I can’t fix this. I have zero control over any of this and I HATE that.
Some things that I’ve found to help me combat all these scary feelings and thoughts are doing things that make us feel like things are still normal. Normalcy is something you take for granted until you don’t have it anymore.
Back in May of 2017, we went from a SAD *Standard American Diet to a WFPB *whole food plant based diet, basically cutting refined, processed crap and increasing the whole foods, eating plant based. It takes a little getting used to and a little more preparation, but it’s not as hard as it seemed at one time. Anyway, we had been doing great, then cancer happened and life became about getting to and from doctor appts and my meal planning and cooking sort of flew out the window, take out was happening way too often and we’d fallen back into the SAD because it’s easy. Now that we feel like we’ve got a better handle on the cancer stuff, we are back to WFPB, and have found an organic farm near our house that has a CSA box (Community Supported Agriculture) program, so weekly we go out to the farm and pick up our fresh grown, organic produce and my kids get to visit the goats and donkey’s and chickens. It’s something normal that we all enjoy.
We’ve found that all four of us really enjoy thrifting! We have a lot of great thrift stores all around us and in the past couple of months, we’ve been to all of them! We’ve found some awesome deals and gotten some really cool stuff. There are times we go and don’t buy anything, just have fun looking at all the ‘treasures’ and other times, we will each find something to buy. The important part is we are all together, enjoying ourselves and having fun.
Basically, we are just trying to live. Live life to the fullest, create memories wherever we can, enjoy being together even if it’s just the mundane stuff like grocery shopping.
As I sit here, the words want to come out, but they don’t, if that makes any sense. It’s like if I type them out, they are real and even though I know they are already real I don’t want to acknowledge them one more time…but I must. It’s our reality. Cancer.
Photo by : Hannah Thomas 2018
For as long as I can remember, my husband has suffered from IBS type issues. He always just chalked it up to different foods or stress triggering it. After years of dealing with this, things changed a bit, he started noticing blood. Initially he thought nothing of it, just figured he probably had hemorrhoids or something equally benign. In fact, he didn’t even mention it to me. One day after I went into the bathroom after him I noticed blood in the water in the toilet and it scared the hell out of me. I went and found him and told him, that’s it, it’s time to make an appointment with a GI doctor and get his gut issues figured out.
Fast forward a few days, he was able to get into the GI doctor fairly quickly and after going over his history with her, she agreed it did sound like typical IBS issues, but to be safe, she wanted to run some additional tests, including a colonoscopy. This was all happening in early December 2017. The day of the colonoscopy, I had Asa with me in the waiting room for the length of the procedure. I will never, ever forget that long walk down that hallway that seemed to go on forever. I remember her words, clear as day…”so, he did great, but unfortunately we did find something and …it’s really not good, it’s cancer”.
The entire world stopped. I mean, came to a crashing halt. I couldn’t breathe. I was trying to focus but all I could hear were her words ringing in my head….CANCER. I just wanted to get out of there and find some air. I still hadn’t even made it to where Sean was getting dressed. I was trying to keep Asa out of everything and hold myself together. When she opened the door to the procedure room where he was, I looked at him and saw in his eyes……everything that I was feeling mirrored in his face.
Photo Credit : Hannah Thomas 2018
The GI doctor had already been in contact with both the surgeon, and the oncologist, and started things in motion before we had even left to get this whole process going of blood work and CT scans and PET scans and eventually surgery scheduled. It felt like forever before we were able to just get out of there, and it felt like the longest walk of my life as we made our way out of there and down through the same Emergency Department where my husband has worked for the last 13 years…both of us had tears pooling in our eyes and spilling out on our cheeks and as we passed a few nurses he’s worked with forever, the questioning looks on their faces as they asked me is everything ok and all I could manage was “no” as I followed him out of the doors into the sunshine.
The whole drive home, we both cried…me as I drove and him as he sat in the backseat with Asa. What in the world happens now? How do we do this? Why is this happening? So many questions and there are really no answers….
Bear with me guys, this might get a little rambly and off path a little, but I’ve been thinking a lot lately about weight. Not necessarily weight…more like (mainly) women’s unhealthy obsession with weight. But I don’t even really think weight is the issue…it’s more what we look like, how big or small we are…why is there such an emphasis on our size? Why is this a thing? Like at what point did women start deciding that their value comes from how they look on the outside instead of the content of their character?
“If you’re always trying to be normal you will never know how amazing you can be.” – Maya Angelou
I don’t think I fit the societal norms here, to be honest. I am big, plus size, overweight, obese, morbidly obese, fat, whatever term you use for describing my size…however, I have NEVER seen myself as big as I actually am. I am confident in my body. Is it harder to do some things physically because of my size, I’m sure it is, but I wouldn’t know because I’ve never been the super tiny girl. I’ve always ‘had some meat on my bones’. Was it harder when I was dating, to be bigger than other girls my age? Nope, I never had trouble getting asked out or getting male attention. Do I have low self-esteem or self confidence because of my size? No, not really. I don’t find my self-worth in my dress size…sorry, not sorry that I don’t see myself as less than because I don’t fit what society has deemed as attractive and worthy all because the scale is a higher number than you are comfortable seeing.
Is this to say that I don’t place value on taking care of myself or eating healthy and moving? Heck no! What I am saying is that I don’t think it’s healthy for one to be so consumed with eating healthy and exercising for the sole purpose of losing weight as opposed to eating healthy and exercising because it’s good for you, no matter your size or the number on the scale. I’m pretty healthy, I have no medical issues that are typically attributed to being overweight (high bp, diabetes, circulation issues, high cholesterol) but people don’t see our medical records when they look at us, do they? They just look at me and see how big I am and automatically assume I must consume all the unhealthiest of foods and do nothing but sit on my butt.
As I’ve scrolled through each of my social media accounts lately, it has struck me that even the most ‘healthy’ and fit, the thinnest people I know still aren’t happy with their bodies. Why? Who is telling you that you aren’t good enough? Why are you letting them? This isn’t even about body positivity to me right now. I do want every body to feel good about themselves, but when I think about it, I want everyone to feel good about themselves because they are happy in their life and relationships and career. I am definitely not trying to knock people who are proud of themselves for being the healthiest, most fit, strongest they have ever been because they are taking the time to work and push to accomplish things physically to test themselves. I think that is amazing and awesome! I just worry about the women who are out there killing themselves to attain a smaller size or smaller number on the scale just because they think that will make them happy or make other people happy.
“Work out because you love your body, not because you hate it” – Katie Goulet
I have many friends who have expressed feelings of not being confident to even wear a swimsuit, let a lone a bikini, because they have a belly, or thick thighs, or are just bigger than what society has told them is the appropriate size to be right now. Each time, the thing that comes to mind is how to get a bikini body….have a body, put a bikini on it, now you have a bikini body. I recently took this to heart and purchased a bikini. Not a tankini like has been my go to for the last 10ish years…but an actual bikini. And I love it. I feel confident in it. It makes me happy to wear it. And I hope that when my daughter sees me in it, she sees that she too can wear whatever makes her feel confident and beautiful and doesn’t let other peoples opinions get into her head and ruin her self image.
For a really long time, I followed the crowd – must lose weight so I can be more acceptable to everyone around me, must hide my body because no one wants to see a plus size woman in anything that shows any skin, must perpetuate the cycle of self hate because that’s what society tells women is normal behavior…I thought I was so fat, I thought I was unattractive, I thought I was unhealthy, I thought my value was tied into the number on the scale. In all of these old pictures of me, I thought I was so huge compared to my friends…what the hell was I on?! Looking at them now, I see a beautiful woman who was healthy and was the same size as all of her friends! All those years I spent hating myself, my body, because why?…I don’t even know at this point.
Do I say all of this to say that I never have moments of weakness now when I see a picture of myself and think, wow am I really that big? No, I totally have those moments but they don’t define me. The number on the scale doesn’t define me. I don’t have a single desire to lose weight so that people will find me easier to look at, or more worthy of their attention. I have a desire to be healthy and to work on loving all of myself, flaws and imperfections included. I’m not willing to hide for anyone anymore. My wish for every woman I know, is that she would see herself and love herself, as is. Stop the self hate, start loving yourself so we can stop the cycle of teaching our children to hate themselves if they don’t fit whatever society has deemed acceptable. <3