Now that I've completed my first chemotherapy infusion (after one false start/learning experience), I have a clearer sense about how the day is supposed to go.

It begins around 7 AM (the exact time varies a bit), when we leave my home in North Philly and head to the facility just off of Washington Square Park about 15 minutes away (bonus: free valet parking). That's followed by checking in, waiting, checking my weight and vitals, labwork, meeting with the hematologist or nurse practitioner, and waiting for the medications to be ordered and checked. There's a lot of waiting in the beginning, and it makes me feel calmer to have a caring person by my side to talk to as well as to hold my seat and watch my stuff. Chris has accompanied me to the first appointments, but he can't always take off from work.

The infusion itself begins at 9 AM, two hours into the day. We enter the infusion suite (a semi-private area enclosed by a curtain, with nurses occasionally entering and exiting).

My first priority is putting on my Paxman scalp cooling cap, which is intended to help me keep some of my hair. (Fun fact: With my particular regimen, Paxman gauges success as a 34% chance of keeping 50% of my hair.) The cap itself isn't too tricky to put on with help, but it does involve lacing bungee cords that I can't reach on my own; anyone with experience braiding hair, using helmets correctly, or wearing combat boots should be able to pick this up in a few minutes. The nurses don't really get involved with the scalp cooling part, other than turning the mini-fridge-like machine on and off through its various stages, so making sure the cap is snug is one of the biggest things my support person can do for me. (No pressure!)

Once the cap is on, it's time for the cocktail of premeds that precede the chemotherapy drugs; it includes a cup full of pills and an IV with four medications, including Benadryl. This part runs about half an hour, and now that I have a port implanted in my chest, it is easier to get things into my body than when multiple nurses had to hunt for a vein. This is a fun time for chatting and snacking. (Nurses can bring snacks to us, plus I've been packing my own. There's also a coffee kiosk in the downstairs lobby, Talulah's Daily is right around the corner, and I've been told that ordering food for delivery is encouraged.)

Once the premed IV is depleted, I receive three separate infusions; the first and third take 30-45 minutes each, while the second one takes a bit more than three hours. If I'm doing it right, I am staying well hydrated with my water jug and so take quick bathroom breaks as needed. I can take the IV into the bathroom with me but not the scalp cooling machine, so I will need help unhooking and hooking back into it every time I go. It's not hard--just listen for the two clicks of the cords.   

By this point, the Benadryl has kicked in and I will be sleepy during my infusions. Other than providing the occasional assistance with the scalp cooling machine during my aforementioned bathroom breaks, you may find that this is an ideal time to read a book, doomscroll, play games on your phone, or work on your laptop while I rest. Or you can tell me stories and I'll be as good a listener as I can be.

After about five hours hooked up to the IV, I spend 90 more minutes on the scalp cooling machine, and then wait 10 minutes to take off the cap. Somewhere in there, I schedule my follow-up appointment for the shot I need to receive the next day, and then we can leave. If everything goes right (a big if) and I'm counting correctly (a bigger if), that's about nine hours after we arrived. You'll drop me off at home or stay over for dinner, and I will be so pleased to have spent this part of my cancer adventure with you. 

I know it's a lot. So if you think you can take me there and keep me company until the infusions start, that might be enough. Or if you just have an hour or so in the middle of the day, but could sit with me to relieve that first friend while they get some air or run out for some food, that would help. Or perhaps you have time at the end of the day to chat while the scalp cooling machine wraps up its work, help me take off the cap and pack up my stuff, then take me home, maybe that would work.

Honestly, I'm not sure how this will work in practice. A number of people have expressed interest in this task but are not sure how it will fit into their schedules. It's so important to make sure that I'm covered for the entirety of these long, once-every-three-week infusion days that there may not be room for the legion of volunteers! (Just kidding, but not really.) So if you decide to be bold and volunteer for it, please contact me or Chris to let us know what part or parts you're up for.

Also, there will be three more chemotherapy infusions in March and April that aren't scheduled yet, and if all goes well there will be two more years of shorter appointments, so I am far from done asking for help. To use a sports metaphor I haven't figured out how to replace, this is a marathon, not a sprint, and I'll need my beloved community to help me go the distance.

In whatever way you are able to support me, I appreciate it from the bottom of my heart.