We are in our second week of hospice. Or is it third? Either way, it’s been a whirlwind. As a caregiver and spouse, there are lots and lots of decisions to be made. Last week, we had walker and wheelchair delivered, tomorrow…. oxygen.
Brad has a nursing assistant come to the house three days per week. He or she is there to help Brad with his personal care. Showering, changing linens, lunch… that type of thing. Then we have a RN at the house twice per week to asses Brad, follow up with any previous questions or concerns, update pain medications… this week, she assisted in having Brads medications changed after he lost the feeling and movement on the left side of his face.
Brad’s left eye is causing him a lot of strain and discomfort. He wears an eye patch a lot of the time to ease some of the pain. He can’t see much from that eye now, anyway.
Brad has had so many noticeable changes lately. He’s not really eating much at all. His normally tall frame is so much smaller now at 165 pounds. He doesn’t want to eat. Not even ice cream.
This is extremely hard. There really aren’t words to describe what I’m feeling.
I didn’t think this could get much harder. But it can.
We met with hospice for a plan for Brad. Navigating hospice care is tough. Understanding what they do and what is “covered” is also tough. I wonder also how much Brad really wants strangers in the house helping him when I can’t.
What I am learning is that they are going to do what they can to make Brad’s life easier. Part of what that means is transitioning to liquid medications. As we transition, the first week or so, Brad will likely sleep. After that, I’m hopeful he will find comfort in any capacity. Sitting, laying, walking, everything is painful. He can find moments of comfort, but then he has to move, causing a great increase in pain.
This is really hard. All of it. Managing the kids so I don’t fail at parenting (hockey season just started and I’ve already brought one kid to the wrong arena), Managing work, because that’s what I do and I absolutely love my job, managing appointments for Brad and the kids, (and me) both of the littles in counseling at different clinics, managing my relationship with my oldest, she seems to have been thrown to the wayside just like when I had cancer. Managing relationships. I just cannot right now. It’s hard enough managing my own people, let alone anyone outside of that circle. Managing my home. Figuring out fall Maintenance is a bitch. Draining sprinklers, bleeding in floor heat and getting that ready, furnace is old, crossing my fingers that it holds up, Getting my camper home from the campground we’ve had it out for the last few months. It needs to be winterized and stored. Normally by now we have all of that figured out. This year, it’s just me.
One of the most difficult things? I can’t wish for this to end. That would mean wishing for this to end. This is not going to get better. This is only going to get worse.
To my dear friends who have loved me unconditionally through my emotions and pain…. I love you. I’m so thankful that you are standing here to pick me up every single day and buy hockey skates for Ailee because I didn’t even know she needed them.
For friends that would like to see Brad…. he is thankful and he loves you.
Did you know that once your doctor writes the orders for hospice, you will no longer be receiving cancer treatments? I didn’t. I guess I’d never thought about it.
I’m not a very confident person. I pretend to be in so many areas of my life. When I make a decision, big or small, I put a ton of thought, second guesses, and self-doubt into whatever that decision is. However, once I’ve made that decision, I have made it, and I’ve thought of any possible repercussions. One of the hardest things for me is when someone else asks, “are you sure” in whatever way they do. For example:
Brad had made the awful and heartbreaking decision to proceed with hospice care. It was very hard. For both of us. So, Brad informed his care team that he was ready. The response that came back? “Are you sure?”
Hell no, I’m not sure! What do you think? Why would you ask that question? No. I’m not sure. I’ll never be sure.
Big decisions made over the last couple of days. My heart is not sure how to feel.
Brad went to the cancer center today to have his second round of this chemo. Labs are always first, then the visit with oncology to determine the plan for the day.
Today, Brad and his doctor decided to stop chemo treatments. The harsh reality is that there is really only a 20% chance that whatever chemo is given that it will make a difference. Brad hasn’t been tolerating any of this well at all. Vomiting for over a week, losing twenty pounds in the same amount of time….. so much pain.
So, for now, we work on pain management and accept the changes.
What does it feel like to have radiation on your eye? Brad says it doesn’t hurt to have the radiation but laying in position while he has it is pretty painful.
About a week ago, Brad began treatments to his eye muscle to attempt to alleviate the pain he is having in his head. The cancer is taking up space everywhere, but behind the eye was proving to be the most so far. That’s really how the masses were found. He was having horrific headaches every day that morphine couldn’t touch. There was double vision, sight changes, and really, now, Brad can’t see much out of his left eye at all.
This part is incredibly difficult for everyone. Brad’s parents are staying with us so they can be with Brad and help to get him to his appointments. With me working, I don’t know how I would manage the kids separate hockey clubs, school for them and caring for the house.
I think people often plan for death with things like life insurance, but no one thinks of the in-between time.
Brad went on FMLA through his employer as soon as he was diagnosed. Unfortunately, some companies then chose to let the employee go, terminating any working relationship that had been present.
So, what does that mean? If we had health benefits, we would have lost them in the middle of Brad’s first round of chemo. Thankfully, I carry them through my employer. It also means that you lose all of your employer paid benefits. Like, LIFE INSURANCE!!!!
It’s really fucked up to think about. But if you hear me say anything ever, make a serious plan for shit like this. You might think that lightening won’t strike you, but, so did I. And here I am, 3 years out of my own diagnosis with a life expectancy of about 5 years. There’s that. Then there’s the fact that lightening has struck me twice.
For now, while Brad is finishing radiation on his eye, his oncologist has paused chemotherapy. This is a new type of chemo that makes Brad incredibly ill. He couldn’t eat for a week and a half after his last round. I’m hopeful that resuming this will also help alleviate some of his symptoms, but wondering if he can tolerate this type of poison.
We continue to be incredibly thankful for the people surrounding us. There are so many days that I feel helpless/hopeless. My community keeps me going.
Do you remember where you were during 9/11? The feelings of absolute need to be with family? I remember desperately wanting to leave my college classes and pick up Makayla from daycare.
How about when the 35W bridge collapsed? I remember where I was and what I was doing both times.
Tonight, I had to tell the kids that their dad is going to die from cancer. I just cemented a moment in their minds that they will never forget.
It was 85ish outside with a blue, sometimes overcast sky. The two littles has been happily jumping on the trampoline while some really great people desperately attempt to finish the tiny house on stilts for them. I had given them dinner on the trampoline, complete with chips and soda-a treat they don’t always get but my give-a-fuck is completely broken, so, what the hell do I care.
I called them inside for a family meeting. I knew, after asking for advice and reading everything I could, that I had to use the words “die”, “death” or both. The kids need to know that I’m being honest and that I’m going to answer their questions the best way I know how. I don’t remember the exact phrases that I used. My hands were on both of them, Brad snuggled A and I snuggled B. And then I said it. And it hurt. So bad.
Yesterday, we found out that Brad’s cancer has moved to the area behind his left eye. And also his liver, pancreas, bones, lungs, possible fracture of L1 vertebrae…. that’s all I can remember right now. the report read “metastasis” too many times to count.
Brad’s heart is broken for his babies. All three of them.
Today is the day that their world stopped turning.
When I started writing my blog in 2017, I had no idea that we would be dealing with cancer again. I also underestimated the amount of people that I would reach. It’s wild, really, and I’m so appreciative of the support we’ve gotten.
There’s this thing that happens when you open your life to other people. There’s a vulnerability for judgement and opinions galore! There’s also vulnerability for love, understanding and support.
In the beginning of round two of cancer, this time, as the caregiver, I was tasked with suddenly losing a partner. Literally the other person to help with anything was in the hospital suddenly, and recovering at home, in a bed, beginning chemo within 4 days of diagnosis. I was also given brand new tasks, such as feeding every meal in bed (moving all family dinners to the bedroom), changing catheter waste, keeping Brad comfortable and getting everyone to everything. It’s a huge disrupt to everyone. I had a lot of moral decisions to make during that time. Which child’s hockey game am I going to go to? What doctor appointments do I need to be at? Am I supposed to take off work for all of it or just the critical appointments? Are all of them critical? I was thankful we had help with appointments so I could get to work most days, but it was still difficult to not be there for everything.
At this point in Brad’s diagnosis and the natural progression of cancer, I’m not sure how much I want to share. Brad is continuing to have greater pain every day. New and lasting symptoms everywhere on his body, but specifically his head. Brad is continuing to follow the advice and treatment of a very skilled team right here in St. Cloud. At the same time, so very swiftly this fucking disease is robbing him of everything. Yet, the only thing he ever complains about is that he can’t play with the kids like he wants to.
Today, I stopped at the camper to bring home most of the food and beer. I don’t know that we will ever stay there again. The last two trips were Brad taking each of the little’s on a separate weekend trip of fun. something they will remember forever.
I miss life. The predictable kind where no one gave a shit about whether I was wearing a mask or not. The life without cancer (again) and tweens (again). My greatest survival tool being sunshine. I can’t even begin to think about Winter.
In this heated political and health crisis, I’m really tired of hearing all. Of. The. Bitching. (Get your ass out and VOTE!). Because if there is something I know for sure, in this life? I’m here, living and breathing. Currently in remission (beginners luck) from a battle that my DNA raged against me that I didn’t agree to. I get to wake up and see the blue skies of summer and see the flowers that I planted in years past. I can hug my littles and FaceTime my big (man, I miss that woman). I can keep smiling every single day for all of the life I still have.
Heated politics, masks, whatever it is, whatever you choose, please, be kind. We are all in a very fragile space. Some more than others.
And smile under your damn masks. I can still see kindness when you do.
Back in January, when my whole life turned completely upside down (AKA Brad was diagnosed with stage IV small cell carcinoma of the prostate), I was due for my cancer check-up. I went to my appointment and had been having a crazy change to my blood pressure that had never been a factor before. At that time, my provider was concerned that the drugs I was taking post-cancer (Tamoxifen…. look it up. The side effects are very fucking real) might be causing this seemingly instant change to my blood pressure. So, it was decided I would take a break from it BRIEFLY in order to rule it out as a culprit.
Well. I did. But then cancer happened. Again.
Fast forward to today. July. It’s literally been seven months since I’ve taken the only drug that can possibly assist my chances of survival. That’s a long time in the self-imposed survivor roulette.
I sent a message early this week to my Dr’s nurse at the Cancer Center. They scheduled me for Friday at 4:30. Today.
My oncologist was frank with me and gave me the breakdown of all the reasons I was being a complete dumbass and not following the rules. He has this father-figure way about him. Doesn’t say a lot, but you better listen when he does.
Tamoxifen regime begins soon. Within the next couple of days. Until then, I’ll appreciate my bicep blood draw from today. It was a doozy.
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.