A few weeks back, a family friend, after learning that I was on leave from work, asked, “So what do you do all day?” And I struggled a bit to respond. Because I’m busy. Like, I have a task list of non-cancer stuff that I would love to get to (refinish my bookcases, paint my living room, a Pinterest board full of crafting ideas, the list goes on and on) but somehow I don’t have the time to get to that stuff. Because cancer is full of appointments and paper work and follow ups and logistics and well, this list seems to go on further than the fun list.
And then, last Tuesday, when I was talking with my Nurse Practitioner, Katie, about how I was feeling, she mentioned how busy my week had been and that maybe played a role in my overall emotional state. And for a minute, I felt validated. Like, “Yeah, I am really busy with this cancer thing, thank you very much.” But moments later I thought, “Well, what else am I supposed to do? Crawl into a hidey-hole and not deal with all this stuff?” Katie was right, I have been busy with all this cancer crap. But for me, its better than the alternative – I’ve always been a believer that its better to be busy than bored. Plus, it makes me feel like I’m doing my part, and keeps me feeling in control of a situation that’s largely out of my control.
So, cancer is keeping me pretty busy. And I figured it be worth explaining in more detail what all that cancer business entails. So, here’s what an average week looks like for me these days (at least the “cancer” part of an average week).
Tuesday – Chemo Day! (this exclamation mark is weird. its less about being excited for it, and more about being excited to get one more round down which is one more round closer to being done done done with chemo (is it 2019 yet? January 3rd, I’m coming for you!) Chemo day generally means the full day is dedicated to chemo and doctors appointments. I’ve been scheduling my other doctors appointments (Gynecologic Oncologist, Plastic Surgery Consultations, etc.) on Tuesday mornings so that I have just one day that is consumed with scheduled craziness (also, more on both the Gyn-Oncology and Plastic Surgery stuff to come in the coming weeks). Then, chemo entails having my port accessed, getting blood work done, meeting with my Medical Oncologist and/or her team, and then plopping into a chair in the infusion room for 3 hours, 6 IV bags, and cirque du soleil style gymnastics to finagle my body and the IV pole into the restroom when I inevitably need to pee in the middle of chemo. All in, chemo consumes most of Tuesday, and because of the other meds I take as part of chemo (benadryl & steroids a VERY odd feeling combo of uppers and downers) my brain and body are both a little whacked out for the rest of the day.
Wednesday – On Wednesdays, I’m still riding high from the chemo steroids so I try and get my cancer errands done on Wednesdays – going to the pharmacy, getting my weekly pill containers all set up, any follow up calls I need to make with my care team, and managing my healthcare claims / bills. Kaci, my Texas based support nurse, calls on Wednesday to make sure I’m doing ok, discuss any challenges I’m having, and give advice on everything from how to talk to my doctor about certain issues, to how much anti-nausea meds I can take without causing other problems. I also go to a plant-based cooking class at Gilda’s Club on Wednesdays – where I’m learning about vegan cooking – I’m working to have more fruits and vegetables in my diet, but don’t worry, I’m not yet ready to get rid of dairy, meat and eggs quite yet. Plus, I’m doing my daily cancer routine stuff – logging my symptoms, meals & meds (in a very old school hard copy excel grid), taking my temperature every 8 hours, taking my morning and evening pills (and freaking out when my chemo-brain lets me take the night pills in the morning, and not realizing it until I go to take the night pills and the square in the pill organizer is empty), and rubbing Latisse on my eyelashes and eyebrows (in a vain attempt to prevent them from falling out). By Wednesday night, the steroids have fully worn off and after 36 hours ‘roid raging (and not really sleeping) I crash, hard.
Thursday – I catch up on all the sleep I missed while buzzing on steroids Tuesday and Wednesday. I usually get up for bowl of cereal at 7A and then go back to bed until 11A. And then because I’m still tired, and also fairly nauseated, I tend to lay low most of the day – lots of naps, snacks, and a little bit of reading. My dad also spends Thursdays with me, so I also direct him to do stuff around the house that I need help with (I have faith this week we will figure out what those 4 light switches near the side-door do … because they can’t possible be decorative, right?)
Friday – I’m still worn out, but starting to feel a little better by Friday, so this is my “back-up” appointment day (think appointments with my nutritionist, phone calls with my peer supporters, additional scans/imaging, etc.). Also, on Fridays (and a few other days) I try to get in 30 minutes of strength training. At this point my neuropathy and chemo-cough are preventing any serious cardio, so I’m working to get in the exercise I can.
Saturday – Its the weekend! At least it is for everyone else, so I try to give cancer a break and spend time with friends and family. Take a nap not just because of cancer, but also because weekend naps are the best.
Sunday – Its still the weekend! See above. If the Vikings are playing at home, make an appearance at Tailgating. Update the weekly planner with the coming week’s schedule. Maybe forget about cancer for a few hours. Read the Sunday paper, because it magically appears on my doorstep without being ordered or paid for (did someone gift me the Sunday paper? Is this a tactic that the STrib is using to try and get me hooked?) Write a blog post, because its been a week since I’ve written last. Teach the dog a new trick, because he needs more mental stimulation. Make a trip to Turtle Bread because their ginger cookies are chewy, delicious, and a good way to calm down my unhappy stomach. Notice how none of this has a direct relation to cancer. Sundays are great.
Monday – This is my best feeling day of the week. Up until last week I almost felt back to normal on Mondays. Alas, it seems that ship has sailed until 2019. Generally the only direct cancer thing I do on Mondays is talk with Corissa, my Optum Nurse who just deals with Target employees going through cancer treatment (the joy of working for a company with 350,000 employees that genuinely cares about each of them). Corissa and I talk mostly about stuff that’s cancer adjacent – getting my health care directive taken care of, managing symptoms, etc. The rest of the day I try and take advantage of feeling decently – going to yoga, getting a massage – and also catch up on the cancer logistic stuff that didn’t get finished the week before. And then, I pack my chemo bag (its a pretty sweet Cat+Jack backpack, like I’m headed off to elementary school), take my Monday night steroids, and head to Monday night trivia with my friends to try and put the ‘roid rage to good use before starting it all over again.
Unfortunately – cancer is basically a full time job
Fortunately – my actual full time job gets this, and is being incredibly generous in taking the back seat while I deal with this cancer crap (don’t worry Target, I’m coming back at ya with all I’ve got in 2019!)
Fortunately Unfortunately 