There are so many days where I wake up and feel like I just can’t do this. I just don’t want to. Sometimes I return to this mind space where I would go to as a child, the place where dreams were reality and everything was so much greater than my little world.
I’m a dreamer. I think positively most of the time, at least when thoughts are focused anywhere but by me. It’s probably why I love music so much. I can almost always find something to soothe my soul or identify with lyrics. Not so much right now.
Tuesday afternoon, a totally normal day, I got a phone call and was hit with a gut punch. Not in regards to Brad’s health or my own, but a life changer. I’m not ready to talk about it.
When life brings you lemons. I guess you bring the gin.
When I married Brad, I was 10 days from having Beckham, wearing a moo-moo, sweating like a heifer and surrounded by so many amazing people.
Before I had cancer, every summer, we would get a couple of kegs of decent beer and invite all of the good people. We would day party with friends that had kids and it would carryon into the wee hours of the morning ending sometimes at daybreak in the neighbors house eating cake for breakfast (a’hem, Ross and Burney). The day we got married, we didn’t tell anyone what we were doing. Midday, the few people that were helping us pull it off took their places, I took off to change moo-moos with Kayla keeping me calm. Our good friend Nate played some guitar, and I came around the house (slowly but surely. Think Thomas the Tank). We vowed to do it all right. Reverend Willy nailed it and we all signed the paperwork.
At the time, I was studying biology and chemistry/biomedical science and intended to pursue medical school, or be a stay-at-home mom. One of the two….. we had dreams. Big ones. Brad was doing so well in his technology position and I was sitting on the nest with my baby chicks. I’d always wanted the quiet country life and we talked about how many animals I could have (someone was going to have to be responsible for my decisions), what our forever home might look like and what life was going to bring us. It was an amazing time for dreaming.
About 8 weeks after our wedding day, we found out I had melanoma on the bottom of my left foot. We shifted our thinking a little at that point and started to diligently plan for our financial future in the event that something happened to one of us. it was only 6 years after that that I was diagnosed with metastatic breast cancer and, now, only 2 years later, here we are.
Brad had a CT scan last Thursday. Today we got his results. They weren’t great, but also not devastating. We were hoping the chemo had been more effective. Today though, his oncologist started him back on chemo. He should have been done at four rounds. This was round 5. We were not expecting this at all. It was supposed to be an easy day of immunotherapy infusions, but instead, chemo. Then radiation. It’s been a shitty Monday to say the least.
It’s hard to find joy amongst all this sadness. But I sure try.
This next picture showed up in my memories yesterday. If you’re sensitive to medical pictures, please stop reading now… you’ve been warned!
It’s hard to read about all the people that are struggling through this pandemic. It’s really hard to read their stories, hear of their trials and tribulations, read about how they’re forced to stay at home or whether or not the government is taking away our freedoms. It’s been entertaining and heartbreaking all in the same breath.
As we trudge through our additional burden of cancer, I frequently search for parallels between my treatment and Brad’s. As I’ve said, my radiation situation was different than his and his side effects are an entirely different beast. Brad is being radiated on his lower abdomen, which also means his intestines. He’s not hungry, and really just wants to sleep.
I check social media frequently, and I really see a trend as a result of this pandemic. Facebook people seem to be coming together and uniting as we are all going through the same hell. I somehow feel closer to my 1171 friends.
Amidst all of this I’m attempting to manage and balance life at home. Asking Brad to do anything for the house or the kids seems like the most selfish thing on earth. On top of that, I can’t ask for help from friends during the pandemic. I also have OCD. Things need to be in order or I can’t move on. If I know there is one dirty dish towel, the laundry isn’t done. I’ll even wash just that one towel so I can have the peace of mind to know it’s complete. That one dish towel has a very loud voice. So, this places me in a very difficult environment. I’m running a house with an 8 and 10-year-old and a puppy. And a cat, but TBH she would run this house better than I am right now. I still think I have more grace than she does, but she’d whap me a good one if she knew.
Anyway, stage IV is different than my stage III B. We know how this will end for Brad, but we will all die someday, right? I speak of my survival odds openly as a way to put it out into the universe that I’m watching closely so as to not to sneak up on me and kill me. The truth is, I didn’t expect to live but one more year give or take and be diagnosed with it again. As I have mentioned before, when cancer comes back, it hits with a vengeance. I had made peace with this awhile ago. I was so thankful to have gained perspective and a few more years to do the things I needed to and wanted to… and for time. Just a little. It was going to be okay when it happened again. I was adamant that I would never do chemotherapy again. That shit’ll kill you. And honestly, I felt like I was dying the whole time I was receiving it. Brad and I had talked about it at length and he was aware of my feelings and supportive of what I needed to do.
Now? Now everything has changed. Now I’m obligated to do everything I can to survive. I don’t have a choice anymore.
So, in these moments, I’m so sorry to my friends and family that I didn’t write thank-you notes to. For all of the things that were given to us. For all of the phone calls and texts I didn’t respond to because I was busy or just could’t possibly. For the entire social media community for always lifting me up.
Also, thank you to every single teacher my children ever had. You helped raise them to be civilized and happy in the classrooms. Please, for the love, tell us what to do to make this easier!!!!
This week has been one of the hardest. I teeter on the verge of tears and screaming and wonder if we will ever have normal again.
Brad was really ill at the beginning of this week. So ill, in fact, he couldn’t make it to one of his radiation appointments. He will make it up in the end, but that’s another struggle. He has 20 more days left. Every day for 20 more days.
I remember the side effects from radiation pretty well. I encountered some burns and a lot of skin discoloration. I was also only two months out from 6 months of chemo and a month out from left simple mastectomy and right radical mastectomy, along with right lymph node dissection. Essentially they cut absolutely everything out from my right side, including my lymph nodes. Then I had radiation.
Brad’s treatment plan is different. He had a couple of procedures, then 4 rounds of chemo where they were also piggybacked with radiation treatments. they hit him hard.
I can see the weight falling off of him, even though he is trying to eat and isn’t moving around too much. I see his daily struggles and try my damndest not to fall into a spiral wondering why this is happening. Why is this happening?
The littles are terrified. It’s a regular occurrence to have A needing reassurance at bedtime and B to lash out throughout the days. They are so confused about what to do, how to feel and what comes next. My oldest is in Mankato, working and staying home. It’s one of the most painful things in the world to be separated from her. Tonight we talked about 9-11 and the impact it had on our country, but that we were here still today to talk about it. Ailee is a realist and is so scared that her dad will get the virus. We listened to songs from the tragedy and talked about how we all came together to grieve. She cried and cried and cried.
I’m thankful to be an essential worker and very anxious to get back into a routine. It’s one of the few things I’ve got right now.
I continue to be thankful for so many things, but right now, I’m struggling.
Do you know that feeling right now that I’m having? With this looming pandemic? The immense sadness and fear, the pain we may have to endure as friends and family are diagnosed, the loved ones we have tried to tuck away during the madness-hoping to shield them at all costs….. sometimes knowing that means that you can’t really see your Dad for months.
That’s a whole lot of how it feels to have cancer, too. Imagine that…. It’s really damn horrible.
Brad completed his last round of chemotherapy last week, and continues to have daily radiation therapy. That’s actually another terrifying journey. Walking into the Cancer Center is scary enough without C-19, but, for the love, Brad is currently soaking in a tub of hand sanitizer and that might not be enough.
Brad seems to have gotten his pain mostly under control. He sees a pain specialist every few weeks or so, or when needed to adjust his medications. The amount of pills Brad takes in a day is staggering. 20 or so conservatively. this is from a guy that never, ever, ever took medication. In the last year or so I’ve been able to convince him to finally take allergy medication. Mostly because it’s really hard to watch a person suffer when you know you can help them.
Brad will be able to continue to take an infusion of immunotherapy every few weeks for an hour or so. This will hopefully maintain his status. He will have multiple CT scans between now and whenever they need to based on Brad’s symptoms.
These next few weeks/months are going to be hard. Imagine the things you would want to be doing right now if you had stage IV cancer…