(Almost) One Year Later - Reflection and Updates

As we approach the one-year anniversary of Mike’s diagnosis, I’ve been reflecting on the past 300+ days – what we’ve learned, how we’ve felt, what’s changed. I’ve written and re-written an update on how Mike’s doing because truthfully, it changes everyday. To no surprise, we’ve had an unexpectedly eventful last few weeks. It’s actually really hard to believe that we’re approaching the one-year mark. One year is an enormous milestone but it has felt like a lifetime. Part of my coping involves reflection and when I look back to the last year, I’m overwhelmed by the wild range of emotions that I’ve (we’ve) felt. I think it’s easy for us to come off as always feeling so positive but we are surely a work in progress and I know that I’m just scratching the surface of how to better control my thoughts and how to navigate this whole situation. I wake up everyday and have bellies to feed, butts to wipe, a house to clean, appointments to schedule and work to get done. I have no choice but to try to remain positive and when I’m not, honestly, I just fake it. I often look back and wonder if I am actually coping or if I’m just too busy to sit and really feel my feelings. Six months ago I would say the latter, but today, with some effort, it is probably a combination of the two. Staying busy is a blessing and a curse, I suppose, but it surely helps me get through the days. One year ago in May, I felt heartbreak and an all-consuming fear of the future. The ugliest thoughts filled my mind, leaving me feeling numb at times. From June through August I was in full on attack mode. I felt determined and motivated. From September through November, we got our first bit of positive news. Mike made obvious clinical improvements and the tumors were shrinking. He started his new medication and we had a game plan. We both felt anxious but hopeful. Since December, it’s felt like a never ending marathon. Towards the end of the year, we sold our house and moved closer to family – an overwhelming project in itself. For the next several weeks, we were sick from COVID and a pretty nasty stomach bug. There’s nothing quite like throwing up while also trying to clean up everyone else’s throw up. Not my finest moment. Mike had some rough days towards the end of 2021. We made the best of the holiday and spent a lot of time driving around looking at Christmas lights. It was magical with our little guys but inevitably, bittersweet. Mike’s health continued to fluctuate and he ended up being hospitalized in February. Since then, managing nausea has been the overwhelming theme. He recently began wearing a medicated arm patch which seems to help for at least a few days at a time. He also received his first two Neupogen injections in hopes to increase his WBC count and avoid halting his medication again for that reason. We started feeling cautiously optimistic but were shot down pretty quickly. The pattern prevails - as one problem improves, another appears. For the last few weeks, Mike’s been experiencing vision issues. They began as issues with just peripheral vision and were suspected to be a possible side effect of medication. His chemotherapy dose was lowered to hopefully help with this, as well as with the nausea. However, over the weekend Mike began seeing double vision while watching Dante’s soccer practice and it’s been constant since. As I’ve written before, any change in symptoms is alarming. Just a few months ago, Mike was feeling really good – exercising and back to work. Now, he can’t see and as a result, can’t walk. If you didn’t know what he was going through, you’d think he had way, way too much to drink. After soccer, I got the boys situated and took Mike to the ER. He didn’t have an MRI scheduled until the 7th but we couldn’t wait another few days. He had a cat scan and MRI surprisingly quickly through the ER, though we had to wait overnight for MRI results. Every minute feels like an hour waiting for results. I was feeling anxious and losing patience while also feeling flustered for missing the boys’ bed time again, even though it’s so rare that I do. I know the hospital is where I need to be, but I still struggle being away from them when we’re there for such long days.

More hospital walls:

Meanwhile, at home:

In the morning, we finally got the MRI report: “No evidence of recurrent or residual tumor. No new lesions”

Tears. Happy tears. Every damn time.

We left the hospital thrilled with this report but still without answers. Mike’s vision has been worsening daily. We had an appointment with a Neuro-Ophthalmologist a few days later and after thorough testing, the root cause for the Diplopia still wasn’t identified. He prescribed prism glasses which essentially trick your brain into seeing one image rather than two. He also recommended a few doses of steroids and a Thiamin supplement. However, after further discussion with our Michigan team, we’ve decided to take a break from Mike’s medication for a few days to give his body a break and see if that helps resolve this. This is extremely prohibiting for Mike and we sure hope it does resolve quickly; until then, the glasses should help. These ups and downs are emotionally draining for our family. All of this combined with the everyday needs of two *extremely scrumptious* but also very demanding toddlers has been….challenging. Motherhood is difficult and emotional to begin with but I think raising our kids under these circumstances has made me ultra sensitive to the already-sentimental situations motherhood throws at you.

Dante’s brain is absolutely exploding with knowledge and I can see him slowly transforming from toddler to little boy. He’s been potty trained for some time but officially graduated from overnight pull-ups a few weeks ago. Our pockets are happy, but my heart is torn. He’s also been waking up every night, appearing at the side of our bed (about a half inch from my face), asking me to come sleep with him. I grab my pillow and join him down the hall because I know this is a short moment in time. Plus, watching him fall back to sleep fills me up more than any traditional “self-care”. I feel the emotions flood in when I’m cuddling and nursing Dominic, our 18 month old. It’s the absolute greatest gift and the bond is so special to me but as I look down at his sweet little face, I also know that our nursing days are numbered. My heart explodes with gratitude – gratitude for being loved so hard by them and for having the privilege of being their comfort and security but at the very same time my heart hurts thinking about how fast they’re changing. I’ve been finding myself feeling mom-guilt so quickly, even if I know it’s unwarranted. Last week, Mike had two appointments in one day and lately, me leaving the house (or room) has been met with a ton of resistance. When I told Dante I was leaving soon for the appointment, he responded “not the Doctor again!”. They’re used to me always being home so while I know deep down this is normal toddler behavior, my mind still wants to connect a deeper meaning to it. When I (or we) leave them, it’s almost always for medical reasons, but it’s still ripping my heart out. Wish us both luck when preschool starts! As a result of all of this, I began therapy once again and have been working on being more mindful, shifting my perspective on things and acknowledging what I’m grateful for in an effort to be a happier mama. Outside of the importance of patient advocacy, there are two major lessons we’ve come to learn over the last year through these efforts. The first: don’t take even the littlest things for granted. The second: perspective has immense control over our thoughts and feelings. I was told hundreds of times in my life “don’t take things for granted!” but it wasn’t until the last few years between my mom’s illness and death, having babies and now a cancer battle, that it became more than just a cliché reminder. This probably helps explain my aforementioned “ultra-sensitivity” to parenting moments. We took for granted some of the most ordinary of things; for example, typing or driving. We never thought twice about the ability to write, email, text, work, etc. until Mike lost the ability and had to work his butt off to gain just some of it back. We never thought much of the freedom that comes with grabbing your keys and running out for diapers or milk (or chocolate) on a moment’s notice. Mike started driving again in the fall but due to the vision issues, he no longer can. There is now a level of coordination needed to do simple things like, get a hair cut or go into the office one day. I certainly took for granted things that Mike did around the house or his involvement with the kids’ routines and other needs.

As for perspective, I’ve been following another couple’s story through their own health challenges. This couple was recently married and the husband was diagnosed with ALS last year. Though absolute strangers, I feel uniquely connected to them and inspired by them. I listened to this couple talk about their journey on a recent podcast episode. If you read my first blog post, you know that ALS was an initial, paralyzing fear of ours after researching Mike’s symptoms. I am unfortunately familiar with diseases like ALS and my heart breaks for this family but I am also so very hopeful for them. At one point in their story, they said the diagnosis was between brain cancer and ALS, and in that moment, they were praying for it to be brain cancer. That hit me hard. They followed by explaining that with cancer there are at least some experimental treatment opportunities and some effective treatments that already exist. This was sort of a pivotal moment for me and it for sure led me to reflect. As did other recent stories, such as that of a local Police Officer who had a young son at home and another on the way when his body reacted tragically to a bee sting or the stories of young children separated from their parents, fleeing Ukraine in fear with nothing but a backpack.

When I reflect on the last year, amidst all the negatives, I can find things to be grateful for. It’s taken a lot of time and reflection to get there and find our way out of the “why is this happening to US?” mentality. We are grateful to have good healthcare, to have had almost no barriers to this treatment, to have a safe home and warm bed to sleep in and to have unlimited family support. While this diagnosis has certainly created a lot of challenges in our life, we’ve never once had to experience added stress from the logistics of traveling to appointments or finding childcare. There is so much comfort in knowing that with just one phone call, we would have a number of family members and friends at our door within minutes. That was put to the test in February and proved to be true. Despite it not going at all the way we imagined, life has still been good to us. Our thoughts are one of the few things we can control in all of this and making the effort to notice the good has helped us in more ways than I can express. What a freakin' year it's been. Hoping the next 300+ days are as boring as they get.