To all my beautiful friends: I know I have been very difficult to get ahold of in the past few months (or the past year!) and that I owe phone calls and visits to many of you. I’ve missed milestone birthdays, wedding celebrations, baby showers, graduations, and other special events. I hope you all know that this is not for any lack of love, or desire for connection on my part. I miss you all and am looking forward to when we can spend more time together.
Even though it’s been over a year since I disappeared into cancer treatment, it still completely defines my life and my time right now. This phase of treatment especially, which started in June and will finish in December, requires so much of me. Brooke is in the hospital more than she’s out, and at clinic constantly in between admissions. In both places I have to attend to her high needs as well as nearly constant activity with nurses, doctors, clinical assistants, charge nurses, pharmacists, child life specialists, her home school teacher, our social worker and case manager, cleaning staff, and volunteers – all of whom have Brooke’s health, comfort, and happiness in mind, but who sometimes seem somewhat unaware of how exhausting all this activity is when taken together…not to mention the maddeningly frequent beeping of her IV pole. In this environment I have found phone calls, emails, blogging, and anything else that requires me to be able to think in complete sentences to be an exercise in frustration. (I had to put a do not disturb sign on our door just to write this post.)
On top of this, Aidan is really struggling in this phase, being away from Brooke and I so much. He has a lot of sadness these days and is struggling at school. Thankfully my mom is here much of the time and she gives him extra TLC, gets him to the hospital as often as possible, and stays with Brooke when possible so I can go be with him. When I’m with him I try to give him as much presence and love and attention as I can.
On the rare opportunity that I have to take time for just me, I am often so overstimulated that I need to spend it in as much silence as I can find. Or talking to my therapists.
Even my closest friends are not hearing from me so if you’re on that list – please don’t think it’s personal. I miss you all and the isolation is one of the many challenges of this journey.
The best way to reach me during this time is by text – it is easier for me to multitask amidst the chaos. Hospital visits are also welcome – please text me first. Also, feel free to continue to try me by phone – I love getting your calls, even when I can’t answer or return them. It’s good to know I haven’t been forgotten and it’s always easier to pick up a ringing phone than to find a moment where I feel like I have time to make a call. So call at will, but please accept my apologies if you don’t hear back from me til January!
46.5 weeks down, 8.5 to go!! The light at the end of the tunnel is getting brighter!
