Tiny Home on Legs. AKA-The Cabin?

Do you know what’s really, really hard? Everything. All of it. Every day. Eating, sleeping, parenting, working out, partnering, loving… Even though there is cancer, this is still real life.

I feel like I’m not allowed to have the normal thoughts and feelings like everyone else. Sometimes, when I’m pissed off, I don’t want to keep it in. I want to yell and scream and fight for my truth. But, why? In what way will that make a difference.

Something I’ve talked about before is the struggle with cancer and suicide. From the caregiver, the adult children, young children and the cancer patient. I can speak only from my perspective. Suicide is very fucking real. We are surrounded by it. On top of that, we have situational depression piled on top of constant changes to health and status within the cancer spectrum. Side effects never end. Pain, neuropathy, sight changes, taste changes, hearing changes, sexual changes, nausea, vomiting, weight loss, lethargy. That’s literally what I could rattle off in the time it took to type. Every single body, every single DNA is affected differently. Mine is different than yours type of thing. This means that doctors can’t predict with certainty what your side effects will be. So, suicide? Yeah. It’s very fucking real. Especially with the access to drugs as a cancer patient.

As a caregiver, it’s really easy to want to check out. I, myself, feel that way. Metaphorically, but it’s there.

This last weekend, we had an entire crew of loved ones give us the boost we’ve needed. We had Brad’s fundraiser last weekend and felt so loved when it was all said and done that thank you hardly feels like enough. We have the BEST neighbors and the BEST friends and family. For real.

We also had the epic treehouse/playhouse build of 2020. The progress is INSANE! So many people have lent us their skills and love to get it done for the kids. Y’all have no idea ( FYI I feel like I’m at the Emmy’s giving an acceptance speech and can’t forget that one person that helped). I am so grateful to all of you. You are teaching my children how important it is to be giving and kind. They will never forget this. Not ever. It will always be part of their story.

Whenever we have good days, we take advantage. During the treehouse build, day 1, Brad was in rare form. He had energy and was able to help a little on the treehouse/playhouse. By the end of the weekend, he was in bed for most of the day.

Brad had day 2/10 for this round of radiation therapy for his thoracic (middle) spine today. He’s having more and more rib bone pain and struggles to lay comfortably most days. I managed to fatten him up a little with all the delicious food he wants. He gets ice cream every day. Lucky guy. Speaking of food, we’ve had these angels coming over and dropping off food in the evenings. I’m not even sure how I was able to do this without them.

Tomorrow is another scan. If you’re the praying type, Brad could use a few.

Nine!

Last weekend was a giant ball of awesome. Boat rides, birthdays, dads, doggies, FAMILY and lots of memories.

Brad has been very intentional in his times when he is without a ton of pain. One of his goals for last weekend was to jump off the dock with the kids and swim to the floating dock. I didn’t get to see it, but I feel like I was there, with the retelling as detailed as it was. Beckham will never forget that.

It’s hard to realize that we can’t go back. We can’t look “forward” for more capable days. We won’t have endless summers of memories to make. I’m trying so hard just to be present.

Today is our anniversary. We went somewhere together for the first time since January that wasn’t cancer related. We did have a beer on a patio on the way home from an appointment once, but it’s not the same as a date.

We had reservations for dinner at a great place in my hometown. Brad didn’t have a mask on for the first time since masks… we couldn’t have stayed if we were indoors.

We both enjoyed a relaxed diner that someone else made and I didn’t have to clean up. It was such a treat. Toward the end, Brad started to feel some pain, and I realized I didn’t bring his pain medication. These are the moments that I feel completely helpless.

In 9 years of marriage and 16 years together, we have had to endure so much. My heart breaks a million times over when I stop to think about the story my children will tell you their own about their lives growing up. It will always include cancer.

Hey You

I’ve always envied my friends that have lots of people in their lives. Hang out friends, beer-drinkin’ friends, spontaneous friends you call on that you’ve known forever….

My husband has that. He has so many people from way back when, and also from a little later, too.

I don’t know if it was my non-traditional way of going through life? Pregnant at 19, married at 20, college that whole time. Not many close relationships are made when you’re parenting and your classmates are partying.

I moved a lot as a young adult. Mankato, St Cloud, Chaska, Belle Plaine, St Augusta…. and my latest and longest stint in Foley. Maybe that’s why?

During cancer, I turned into this introvert and was terrified of people for a little while. I think it was literally a full year that I didn’t do anything outside of with my family. Maybe an occasional drink with a friend, but not much else.

I have some really, really great friends that I absolutely love, but I’ve become kind of a downer lately. A burden of sorts… no one really wants to hear about my life. It’s fucking sad. All of it.

I try to remain positive. Positivity is so powerful. but this? This is lonely. This is really, really lonely.

Bone Mets

That’s the term that’s used when your primary cancer has metastasized to your bones.

We were right. It’s in his spine, ribs, femur, hips, knee and really, all over. Those were the most active areas.

Treatment on his thoracic (middle) spine will begin next week. we weren’t expecting the femoral activity to be as significant as it is, so planning for that area will likely come next. It takes about 10 days to have a planning CT scan to mark Brad with “tattoos” in the new areas of radiation, plan the dosage of radiation, and complete all of the pre treatment things that need to happen first.

Brad turns 48 this weekend. It’s also his fundraiser and Father’s Day. Next week, he will begin his treatment on our anniversary.

A long, long time ago.

Untitled

We still have unanswered questions. I don’t know if I’ll ever understand all of what is happening. I definitely won’t understand why.

I was able to go INTO the Cancer Center with Brad today for the first time in months. The last time was for my very own oncology appointment. Since C-19, obviously there have been significant changes to appointments, and sadly, many don’t have the option to have guests accommodate them. Today was different.

Because Brad’s cancer has moved to his spine, today was considered an initial appointment with radiation oncology. However, because Brad AND myself have both had radiation treatments before, we are very familiar with the process. It was an opportunity for me to ask questions and see the scans, so I could fully understand what we were dealing with.

Today we learned that Brad has cancer in his lumbar, thoracic and cervical spine. Along with both hips. Essentially all of the bones that we could see on the MRI from Monday have cancer. Hips, back and neck. Multiple lesions ranging in size. Tomorrow Brad will have a bone scan to show us where else it might be. We suspect it is likely in his legs, in particular in his knees and possibly his elbow and ribs. All areas of pain.

Bone lesions that cause pain are easily treatable by radiation, but not all of them can be treated at the same time. For example, Brad had to chose his most painful 2 areas to concentrate on palliative radiation therapy. It looks to be thoracic and cervical spine area. Around mid-back and neck.

This also means that Brad has to limit his physical activity. No lifting, no running/jumping/jarring movements. All can cause bone fractures and because of the location of the lesions (potential arias of weakness), could cause paralysis.

This is so fucking hard.

June 8, 2020.

For a little over a month, Brad has been having a lot of back pain and weird nervous system signals. Like, when his back hurts really bad, his elbow hurts….. that kind of thing. Last week, Brad was explaining that his back hurt. I asked him what he thought it was, but I could tell that he already knew.

The day began with Brad heading to the Cancer Center/Health Plaza for an MRI to check on his back and try to figure out what was going on. It could be a couple of things. 1. Side effects of chemo/radiation, or, 2. Progression. The news came today, the same day as the MRI.

“Findings compatible with osseous metastatic disease involving multiple lumbar vertebral bodies.” The cancer has traveled into the bones of his spine.

It sounds like Brad will have additional radiation on the lumbar area. Quite honestly, until now, we were very hopeful that Brad was going to beat the odds, but the reality is that we knew it was going to happen.

Today we had to tell our kids.

As anyone could imagine, their little hearts are broken. This time, there is nothing I can do to make it better or any words or gifts I can give them that will make it easier to understand.

Music usually soothes my heart. Tonight I can’t even.