Our Tribe

Throughout this whole journey so far, we’ve been surrounded by angels in different forms, our tribe. Each person has touched our family in a different way, helping, supporting, encouraging, meeting different needs. I don’t know how people with no support manage to make it through, I know for certain we wouldn’t be handling things as well as we have been if we didn’t have our tribe.

In the days leading up to surgery, things were a little stressful. I think it was more fear of the unknown than it was actual fear of surgery and how he would do with all of that. Surgery was scheduled for a Monday morning, and the Friday before, our car radiator blew and needed to be replaced. My husband and I know a lot about a lot of things, cars are not one of the things either of knows much about, fortunately for us, my best friends husband is a mechanic and he said buy the part and bring the car over and I’ll fix it. He worked his day job all day, came home and spent the next 3 hours fixing my car at no charge. To say it was huge relief and a huge blessing to us, is an understatement.

The next morning we woke up to a message from another one of our good friends saying, hey if you don’t have plans, we’d like to provide childcare and send you to a hotel for the night and pay for a nice dinner out for you guys. Cue all the tears. This family was going through a huge battle of their own at the time and we were doing what we could to be there and support them in their fight and they were doing the same for us. We quickly arranged for another of our good friends to come stay with our animals for the day and night and packed our overnight bags and headed up the hill to Prescott. Once we dropped off the kids and made our way to our hotel, we were so excited to just have some down time and not have to worry about anything. We had a lovely hotel room and the view was great.

After relaxing for a while, we decided to head out and explore a little bit before we had to be at the restaurant for our reservation. We walked through a few of the antique shops in downtown Prescott and enjoyed not having to rush through or try to keep little 4 year old hands off of everything, we just got to be. We then made our way over to this little Italian restaurant called Papa’s, it was awesome. Great food, great service, the atmosphere was amazing.

After dinner we went back to the hotel and watched a movie and fell asleep, exciting I know 😉 the next morning we got up and showered and went and picked up the kids. We made our way home and Sean had to start his prep for surgery, unfortunately that meant fasting and lots of bathroom time. We really just tried to relax as much as possible and did the last minute check of his bags for the hospital until it was time to go to bed. The next morning was when it all really would start the next long phase of dealing with the reality of cancer.

Glitter and Fluff and Girly Stuff

I remember fondly the days when I didn’t spend all of my waking moments worrying about cancer and chemo and medical bills and everything that has come into our lives in the last 3 months. I remember when I got to just talk about makeup and ‘fluff’, the girly stuff I so love. Nowadays, I feel guilty taking any time for myself if I’m being honest. I know, it’s just as important for me, the caregiver, the one supporting the warrior, to take time to recharge and reset, but it doesn’t come without a certain measure of guilt…I’m just sayin.

One thing I truly love is makeup. You may not get it, but some of you might…I’ll try to explain.

Makeup is pretty, it’s feminine, it’s glamorous, is flirty, sassy, sexy, fresh…or I should say, those are all things that I feel when I am able to take time to play with makeup. In my every day life, it’s anything but pretty, feminine, glamorous, flirty, sassy, sexy, or fresh. It’s tiresome, sweaty, dirty, stinky, nasty. I’m forever cleaning up messes made by my 4 year old tornado, or wiping a poopy butt, or cleaning something sticky off every surface of all the things in my house, I always have a stain on my shirt, doesn’t matter old or new, if I’m wearing it, it’s got a stain…because kids.

Makeup is an escape. I don’t think about all of the scary things happening around me, I sit at my vanity and tune everything else out except for the way my makeup smells, the texture of it, the way a makeup brush or sponge feels against my face, the beautiful colors in an eye shadow palette.

It doesn’t have to be expensive makeup, or luxury brands…I’m just as happy to get a drugstore, or affordable product to play with and test out. It’s transforming the way I see myself, knowing that I am still the same person with or without all the makeup and glitter, but feeling like a better version of myself, when I have my ‘face on’.

Makeup is something that is just for me. Only me. No one else gets to play with my makeup, it’s not something I have to share, like virtually everything else in my life…as a mom, that’s what we do right? It’s nice to have this one thing just for me, to help me get away for a little while and escape the reality that is my life currently.

Life Update…Brain Dump…Picture Dump

Life just keeps happening, no matter how we try to slow it down.  It’s been a couple of weeks since my last post, and we’ve just been trying to live and deal with everything this cancer diagnosis has been throwing at us the best way we can.  This post might be a little all over the place, but I’m just trying to brain dump and get it out of my head, if that makes sense.

After surgery, we met with his oncologist, she went over the reports from the surgeon and the pathology, told us his stage was 3c, went over all the specifics of chemo, what protocol he’d be on, side effects to expect, it was a lot to take in…like every appointment before it.

We decided tacos and tequila were in order for dinner that night…you gotta do what you gotta do to cope sometimes and for me, that was it.  Trying to just breathe and be present in each moment is hard when the moments are a reminder that cancer has invaded your family and threatened to tear your world apart.

A few weeks after surgery to remove the tumor and surrounding lymph nodes, we got the call that we needed to schedule a repeat CT, just to see what a baseline would be with no cancer present before chemo, and a port placement so they can administer chemo and do blood draws through the port instead of having to poke him with an IV every time they’d need to get blood or getting chemo, this will save his veins and it gets the chemo to his heart faster, which in turn pumps it through his system faster.  We got the call that we’d need to do these two things around 4 in the afternoon and by 9 the next morning we were in the hospital to get it done.


It was fairly quick and painless, that’s what Sean tells me anyway, we were home by lunch and that was that.  He said he had a little tenderness, like someone had punched him in the chest…of course, he did this without sedation as is becoming standard for him…he did his colonoscopy with no sedation too.  Anyhoo, port is in, CT is done, the only thing left to do is start chemo.

Aside from that, we’ve been trying to finally get around to those things that we all seem to put off for another day…

We’ve been married for 14 years, this is the very first time in our marriage that we have a bedroom with actual grown up furniture and decor on the walls and matching night stands, like it all looks like it’s meant to be together.  I love going into our room and seeing my beautiful bed and everything all tidy.  It makes me smile to know that we’ve put thought and effort into creating a space for us.

Another project we recently finished was our entry way and gallery wall.  That light fixture in the entry way…it used to be a huge glass ball reminiscent of when this house was first built 30 years ago.  We finally picked a new light fixture and replaced the old one, got our beautiful hutch setup, and redid our gallery wall to include a canvas from our recent session with my good friend, Sarah.  It makes my heart happy to look over and see my entry and gallery wall.


If there’s one thing you take from this post, let it be this, don’t wait until you or your loved one has gotten a life altering diagnosis to do things for you, things that you’ve been talking about doing for a long time.  Do them now!  Enjoy your life, every day, every moment is a gift.

I know how this ends…

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.

it’s not all sunshine and rainbows…it’s still cancer

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.

I want my 64 years like he promised

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.

Pathology


In the hours and days following my husband’s cancer diagnosis I felt a range of emotions, as you might guess, I felt everything from terror, despair, depression, anger, avoidance, fear, sadness; there were also moments of laughter through the tears, which lead to confusion and anger and sadness all over again. It was a non-stop cycle of all of these emotions as we settled into the knowledge of what this diagnosis of colon cancer would mean for our family.

mental health, colon cancer, A Little Dash of Diva

I guess it was sort of like the grieving process, you go through all the steps until you come to acceptance and then you move on and do what has to be done. During the colonoscopy, his doctor had taken samples of tissue to biopsy, she was certain it was cancer even before the pathology came back but I think in the back of my mind I was hoping that she was wrong and the pathology would come back that it was just a benign growth and he wouldn’t have to go down this path. When the pathology results came back the next afternoon confirming that it was in fact, adenocarcinoma, it was a punch to the gut all over again. A feeling I would become painfully used to over the next few months.

adenocarcinoma
[ad-n-oh-kahr-suh-noh-muh]
Spell Syllables
Word Origin
noun, plural adenocarcinomas, adenocarcinomata [ad-n-oh-kahr-suh-noh-muh-tuh] (Show IPA). Pathology.
1.
a malignant tumor arising from secretory epithelium.
2.
a malignant tumor of glandlike structure.

fuck cancer, cancer, colon cancer, A Little Dash of Diva

As we moved through the next couple of weeks with Christmas and New Year’s, he had labs drawn to determine his ‘cancer marker’ number or CEA.

A normal level of CEA is less than or equal to 3 nanograms per milliliter (ng/mL). Most healthy people have levels below this amount. CEA levels will generally return to normal between one and four months after the cancer has been successfully removed.Mar 30, 2017
CEA: Purpose, Procedure, and Results – Healthline
https://www.healthline.com/health/cea

We learned Sean’s CEA was 10, not super high, which was comforting on some level I suppose. If it were higher, it would likely have meant there was more than just the one tumor to worry about, but with it as low as this, it gave me hope that we had caught it early and it would be relatively easy to treat.

We were still waiting for his appointment with the surgeon who was to perform the surgery to remove ‘Pennywise’ as our family came to call the tumor…

Do I Win The Bad Mom Award?

Do I win the bad mom award? That’s my question to you…

See, I have an 8 year old daughter and as much as I want to shield and protect her from all the evils in this world, there are certain things that I refuse to keep from her. 9.11, Newtown, and now Boston are all subjects that I let her watch reports about in addition to watching the reports of course her dad and I sit with her and have a conversation. I ask her if she has any questions or concerns about what she has seen or heard. I make sure that she knows that even though there are people who wish harm on strangers there are even more still who would rush to help those same strangers, and that those are the people who are heroes.

I have always believed that for the most part, keeping the tragedies that happen in life from our children does more harm than good. You lose out on teaching valuable lessons on humanity and the goodness of people, not to mention teaching them to be the kind of person who rushes to action in a tragic situation as opposed to standing around feeling helpless.

This extends to personal tragedies as well. When we brought my Mother In Law to live with us when she had been given only months to live after being diagnosed with a brain tumor, my daughter was 4 years old and she was included and involved in EVERY single step of the process from setting up Gramma Marilyn’s new room to the daily meetings with her Hospice nurses. Hannah was allowed to ask questions, talk about anything and everything she saw and felt about the whole situation. I truly believe that because we included her in everything, it was less scary for her when Gramma Marilyn progressively got worse. She was able to spend time with and help to care for her Gramma. She was also there (in another room with the hospice nurse) the moment Gramma took her very last breath. Hannah was there when we went to the funeral home to make all of the arrangements for Gramma Marilyn and helped us pick out the lovely wooden urn that Gramma Marilyn would be placed in. During that same time period we were also caregivers to my Grandmother who was battling Alzheimer’s and bi-polar disorder.

Pretty heavy subject matter for an adult let alone a child, I know. But again, Hannah was included in every aspect of taking care of Grandma, which helped her to feel more in control of the situation. Also I believe that those experiences have shaped her into the immensely caring, loving, understanding, accepting, empathetic individual that she is today. Believe me when I tell you though I have ‘mommy guilt’ every single day about how much she has experienced in her young life, but ultimately if given a ‘do-over’ I wouldn’t change it. I truly believe that she can handle the truth about life and death and tragedy. I believe that I have taught her to not judge people based on how they look or who they love, that if you have the ability to help someone in need it is your job to do so.

I’m sure that to some people I’m a horrible mother for not keeping these types of things from my daughter and that’s okay.  Everyone is entitled to their opinions.  However, I know that I made the right decisions for MY family and at the end of the day, that’s the only thing that matters.

I pray for peace for the victims of these horrific tragedies.  I pray that law enforcement will be able to determine quickly who was behind these attacks and to bring those people to justice.  Now, let’s all go hug our friends and family extra tight and maybe say a few more ‘I love you’s’ to the people who matter in our lives.

Blog Star: Hi, I’m Chrissy

I thought it would be fun to play along with Mrs. Monologues for Blog Star and sort of re-introduce myself to y’all since we have so many new followers and readers around A Lil Dash of Diva these days!

Most of you have probably figured out by now that I am a girly girl. A mama to a 7 year old cheerleading, dancing, makeup-nail polish-clothes-shoes-purse loving daughter. I am a girly girl with a love of pink, sparkle, shiny, and all things glamorous! I blog about pretty much anything that strikes my fancy from recipes and beauty, to photography and field trips with the short one; I also have shared my struggles with infertility and PCOS as well as our families story about being a caregiver to my dying MIL and my GMA who had dementia and bi-polar disorder. It is all here on this here blog…

I’ve heard it said by many other bloggers, and it rings true for me as well; blogging is cheaper than therapy but just as effective for me. I get to share my ups and downs, my loves and things that annoy me. Instead of keeping everything bottled up inside, I share it here and whether anyone reads it and can relate or not it helps me to just get my thoughts out…if what I write resonates with anyone and they are helped by my story that is awesome and I am happy to have done something to help.

If you are new here, Welcome! Thanks for stopping by, I would love to get to know you so drop me an email or leave me a comment! Thanks to Mrs. Monologues for hosting such a great link-up for all of us!

Guest Post – Ashley

via pinterest
Next Monday is a big day for me, it is the kick off 
of our
celebration!

Last year i was asked why I relay

 I really had to think about that, do a lot of deep soul searching.
 I relay for research.
 Plain and simple.
My cousin lost her battle with Acute myeloid leukemia the year she turned 16, 
but she was also a part of something huge…..
 She was involved in a clinical trial of Gleevec in kids,
Gleevec saves so many lives now.
 She got it….

My dad, when he got his Terminal diagnosis, 
did he lay down and die?? 
Absolutely not.
 He enroled in a Clinical trial for a drug that was supposed to shrink tumors…. and it did for a while. He continued to hope and fight.
 My dad got it……

Now I come back to why I relay… 
What these to amazing fighters taught me, 
without research nothing will change. 

Every cancer will be just as 
deadly
just as
 nasty,

 So maybe i will use my misfortune and loss 
to help someone else not have it quite so bad…. 

I will give unto others, 
myself.
I relay to honor the ones who gave their bodies to help others
 even when it may not have helped themselves,

 I 
Relay 
for

Relay 
For 

This year my goal is $5000
I am a long way from it.
Please make a donation,
Help me save lives.
Please share this post, 
the link to my page, 
anything.