Chemo #...we can't remember anymore

Is this chemo #6 or #7? Phillip and I can't keep it straight anymore as it is still this blurry whirlwind. While it feels we have developed a new rhythm to life and level-set expectations post-chemo, I will continue to have a love/hate relationship with chemo days. While I know these drugs are giving us more time, I despise the short-term effects on Phillip.

Phillip had chemo today and we are now back to our bi-weekly Monday schedule. Needless to say, having a "case of the Mondays" has a whole new meaning since the start of this. Thankfully, shifting back to Mondays allowed Phillip to have a few more days in between the last treatment and this one. This was a much needed reprieve to allow his body additional time to recover. The fatigue he has been experiencing has been overwhelming at times, but he continues to push through with the same quiet strength that carries us both.

I was unable to go to chemo with Phillip today because of a nasty cold - 'tis the season. He flew solo and came home around 2pm looking exhausted and headed to bed for a nice chemo slumber. We are still pending his official labs but the nurse commented his hemoglobin decreased slightly again. I am frustrated because if his hemoglobin could increase, this would greatly impact his energy levels.

There is such a unique grief with a cancer diagnosis in that you are not only facing the unimaginable unknown but you also mourn the life before. I miss the Phillip going 100mph while starting new unexpected hobbies (training for Ironman races, whittling wood, playing the credit card points game, beer making, grilling, throwing Game of Thrones themed parties, the list goes on). But for some reason this is our path now and while its not what we expected, he is the strongest person I know and that is where my love and hope live.

Phillip has his next CT scan on October 10th. Let me tell you the scanxiety is real.  I truly believe we’re due for some positive news, and I’m holding onto that hope, manifesting every bit of good news I can imagine. His tumor markers are showing positive indicators. The hard rock on his liver that we could feel by touching under his ribcage no longer exists. I have to believe this is all promising.

Phillip and I had our first couple’s therapy appointment this week. It’s a little ironic, we’ve talked for years about going, and it took a cancer diagnosis to finally push us to make it happen. Immediately, it was evident to the therapist that Phillip has such a positive mindset. It has been amazing to witness his unwavering positivity and strength through all of this, I am just in awe of him. Meanwhile, I couldn't go through tissues fast enough in the session. As the conversation unfolded, the therapist helped me see something I hadn’t fully recognized in that I’m living in a state of hyper-vigilance, which apparently is common with ongoing PTSD. Oddly enough, it was encouraging to put a name to it. To hear her say that this “mental hell” isn’t forever and there’s a path forward gave me hope.

The therapist asked us both what our mantra has been through this journey. Phillip then began to share how there are so many things out of our control with this diagnosis, but the one thing we can control is our attitude. If he can walk into his chemo sessions with a smile on his face and an upbeat mindset, he is going to do it, because walking in as a puddle of tears doesn't help the big picture. Honestly, once he beats this, I’m convinced he could moonlight as a motivational speaker.

Then it was my turn. I told her my mantra is: “I’m a black cat.” She looked puzzled, so I explained that black cats are unbothered. They slink around, cool and aloof, and that’s the energy I’m trying to channel. I want to stay “unbothered” by Phillip’s little groans, sighs, and looks of uneasiness, rather than overreacting to every single one. It may not be the world’s most adoptable mantra, but it works for me. And now, whenever I start spiraling, Phillip just grins and says, “Kel, be a black cat!”

It may sound a little silly, but instead of letting every sound or expression from Phillip trigger a wave of panic, I’m learning to pause, take a breath, and remind myself that not everything is a crisis. We also spoke about the scanxiety and the therapist provided sound advice: "No matter the outcome, there is always a plan." This reassurance is a reminder of the toolbox medicine and science have established.

The therapist then asked about Lenie and we told her Lenie knows Daddy has cancer. (Lenie does confuse it with Covid, but thats what happens when your early years are face masks and hand sanitizer and its the only "scary" "C" word a child knows). The therapist told us we are doing all the right things with Lenie and that when she asks questions, we need to answer honestly and maintain her trust. As parents, Phillip and I have always wanted to keep an open dialogue with her and we will continue to share information when the time comes. Lenie has matured in new ways in the last few weeks and it has been truly graceful to witness. She has really stepped up to help me with household tasks and when she sees me crying, she gently puts down what she is doing and quietly comes over and gives me a hug. I am so proud of her compassion already.

Lenie’s new favorite song has been “Fight Song” by Rachel Platten, and she asks for it every time we’re in the car. Her beautiful intuition has me blasting the very words I need to hear right now. We sing at the top of our lungs, and I can’t help but wonder,“Sweet girl, how did you know I needed this?” 

We’ve all been keeping busy the last few weeks. Phillip was able to take his beloved annual BWCA trip with some of the “outlaws” in my family. Knowing he was in his happy place brought me so much peace, and I’m incredibly grateful this tradition could still happen this year.

Meanwhile, since the caretaker life can be lonely, I decided to take in a surrender cat. Needless to say, he’s made himself right at home. We quickly discovered his quirk: he only drinks out of faucets. It’s a little absurd, but thankfully Phillip loves me enough to put up with our new housemate’s refined tastes.

Friends, many of you have asked how you can help. The most meaningful thing right now would be to send your prayers, energy, and positive thoughts for Phillip’s upcoming scan on October 10th.

Thanks again for being here with us.