The week cancer got really real

Week 3 of chemo was the week chemo tried to kill me, which led to week 4 of chemo being the week cancer started to feel really real. There’s nothing quite like a 36 hour hospital stay to force you to come to terms with the fact that you’re sick. So Thursday, once I was discharged from the hospital – and after 4.5 hours of mid-day napping, because hospitals are good at keeping you alive, but really bad at letting you sleep – I decided to buckle down and get to all the cancer logistic stuff that I had been putting off.

By Thursday, my hair was very obviously starting to fall out (my apologies to the Abbott custodian who had to deal with the hair balls I left behind). In addition to being a shedding machine, my scalp was itchy and hurty, so I decided it was time to get my haircut. I went to Juut on Friday afternoon, explained the situation, and an hour later had a pixie cut for the first time since 7th grade. Its certainly not my favorite style (or 2nd, or 3rd, or 10th) but it makes the aggressive hair shedding more manageable, makes my scalp less itchy/hurty, and makes for really easy showers (if my drain could talk, it would be thanking me for the haircut). Fortunately, while my hair isn’t thick, I have a LOT of it. So several weeks after my hair started falling out, I still have enough to rock my pixie … but I’m preparing for the next round of haircut, which will be a tight buzz (once it gets patchy or I start looking like I have female pattern baldness).

Next came the part I was avoiding like the plague – paying the medical bills. I knew how much I would have to contribute before hitting my out of pocket maximum, but the health insurance company doesn’t make the process easy. I would have preferred to just cut UHC a check for the amount I owed, and let them divvy it up across the 16 providers and 29 bills that I owed money on. But no – that would be too easy. So I had to flex my excel muscles and get to tracking all of the bills, my various HSA accounts, and start paying. 21 bills paid later and I was all caught up (and waiting on the final 8 bills to arrive), with an impressive excel sheet to track it all and ensure I have all the details I needed come tax season. Whew!

Then, I got to the really morbid stuff – I filled out my Health Care Directive (aka Living Will, the thing that details what actions you want taken if you’re still alive but unable to make your own medical decisions – I told you it was morbid). At my last 3 doctors appointments, I had been asked if I had a health care directive on file, and the hospital really put the nail in the coffin (pun intended) – I had to get my HCD in place, just in case. Fortunately, my oncologist had a really simple 8 page form that was sort of like a multiple choice test, you read the statement and then checked the box for the option you wanted. After getting into the right headspace, and promising my Optum/UHC support nurse that I would get it done, I sat down and figured out what medical decisions I would want made on my behalf if I couldn’t make them myself. And thanks to the awesome printer/copier that my dad hooked up a few weeks back, I was able to make all the copies needed to hand them out to all the different places I’m getting medical treatment so that everyone who needs it has a copy on file. (big shout out to Bailey & Chelsea for being my witnesses and signing my HCD to make it official)

Next came the slightly more fun stuff. I had been advised to get my wig all taken care of before I was dealing with hair loss and I was originally scheduled to pick up my wig on the Wednesday after round 3, but since I was waylaid at the hospital, I had to delay pickup until the following Monday. I dragged Mom along and made the final call on the color of the wig I wanted (complicated slightly by “I’ve been blonde for 6 weeks, maybe I should get a blonde wig?” and that wigs in my natural hair color looked really “wiggy”). I settled on a brunette with blonde highlights straight long-bob – as close to my natural hair without looking like Dark Betty Cooper (if you’re not watching Riverdale, you clearly have mature TV taste, and that’s nice and all, but my pop-culture obsessed teenage soul LOVES that show). My mom thinks my new wig looks like my hair in grad school (when I spent an inordinate amount of time outside, on Peck Beach in West Haven, because if you have to read all those cases, you might as well do it in the sand with a view of the Sound and get some nice natural highlights as a result). I’m not sure that I’ll actually wear the wig all that often, I’m probably more likely to be found in a beanie, but it’s nice to have it as an option.

Another piece of advice I had been given was to connect to various Cancer networks and to leverage them for connections to peer supporters. So during “Get Your Cancer Logistics taken care of” week, I reached out to:

• Sharsheret – Focused on supporting Jewish women with genetic cancers (like BRCA)
• Firefly Sisterhood – A MN organization that connects those diagnosed with Breast Cancer to a “guide” who has dealt with Breast Cancer
• FORCE – Focused on improving the lives of individuals and families affected by hereditary breast, ovarian, and related cancers
• Gilda’s Club – A network of more than 54 supportive, free and welcoming “clubhouses” (including one in the Twin Cities) where everyone living with cancer can come for social, emotional and psychological support – named in memory of comedian Gilda Radner
• Young Survivor Coalition – Dedicated to the critical issues unique to young women who are diagnosed with breast cancer
• SHARE –  Providing dedicated, experienced support for women facing breast or ovarian cancer

From all these resources, I now have 3 peer supporters (Deena from Sharsheret, Jaquie from Firefly & Elana from FORCE) to help me navigate everything that I’m going through, ask questions, get advice, and if need be just complain about how shitty this all is sometimes. Plus, I’ve got time scheduled to check out Gilda’s Club, a YSC event next month, and tickets to the Twin Cities Breast Reconstruction Awareness (BRA) Day so I can figure out what kind of new boobs I should get (its actually a really complicated set of choices – more to come on this later as I learn more!)

Finally, after a few more phone calls to follow up than I would have preferred, my Short Term Disability claim was officially approved, and I will be off of work until January 14th (and likely to return in a work from home capacity until surgery as I’ll still be immunocompromised from the chemo, working to stay healthy in prep for mid-February surgery, and it will be the middle of flu season – I love you Target, but you’re chock full of germs!)

Unfortunately, the logistics of cancer are no joke. When our family friend Dr. Bob asked me what I was doing with my time since I wasn’t working I just said, “I’m surprisingly keeping very busy.” The week of “Get your cancer logistics taken care of” starts to explain why my days are seemingly still chock full of activity and things to do.

Fortunately, my reward for a week of cancer reality was a 5 day trip to Northern California (a trip that was booked in February, and miraculously I was still able to go on despite all this cancer bull shit). Stay tuned, more on my NorCal adventures tomorrow…